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Category Archives: Ohio Stem Cells

Fungi foray: Wild mushrooms are a key part of food chain – Farm and Dairy

Posted: August 5, 2021 at 2:23 am

Originally, the word foray meant an invasion or raid, usually with the goal of plundering. More recently, its come to mean exploring an unfamiliar subject or activity. But for mushroom enthusiasts, the word has special meaning. A foray is any time they get together and learn about their favorite fungi, as 20 or so people did at Scenic Vista Park, south of Lisbon, Ohio, July 11.

As he has for the past 20 years, Walt Sturgeon, of East Palestine, brought samples and answers to questions to the parks pavilion. Having researched and written books about them for the past 45 years, hes become a nationally known expert on mushrooms.

Sharon Parrish, of Salem, said she had a lot of mushrooms growing near the many oak trees in her backyard. Squirrels eat them, and she was worried that her dog would, too. She picked the mushrooms to try to keep them from spreading, but that didnt work, she said.

Youre picking an apple from a tree, Sturgeon said metaphorically. Youre not destroying the organism.

He explained that the mycelium, the network of fungus that produces mushrooms, is like a giant spider web that seems to go on forever, unseen because each strand is only as wide as a single cell. More than 8 miles of these cells can be found in a cubic inch of soil.

These networks are mostly underground, but they can also grow on dead wood, tree roots and other surfaces. If the mycelium has enough to eat and the weather is right, it will make mushrooms, which are the fruit of the fungus.

The mushroom is just the tip of the iceberg, Sturgeon told his audience. Picking it just removes the fruit, not the mycelium fibers that can live for years, even decades.

Having grown up on a farm south of Alliance, Ila Oyster wondered if pasture mushrooms are good to eat, and what, exactly, are puffballs?

Ive eaten mushrooms all my life, said Oyster, who now lives with her husband, Ken, in Kensington. They were always a treat for me.

Sturgeon remembers eating pink-bottom mushrooms, which he called a second cousin to the store-bought varieties, that he picked from the pasture as a kid. But not all mushrooms that grow in pastures are edible, he said, so its important to identify them first.

Puffballs are mushrooms that contain millions of spores. Theyre edible when theyre white, but if dark green or purple, they will burst at the slightest touch and send spores all over. He compared puffball flesh to tofu and recommends cooking it in garlic butter or frying it with bacon.

Another participant wanted to know about the mushrooms that look like big fans and grow on trees. Sturgeon said those are called artist conk and make great material for painting and etching. They can span a foot or more and grow bigger each year, making rings like trees.

But these mushrooms are even more dense than the wood they grow on, and are only edible for beavers, he said. Mushrooms have symbiotic relationships with trees, he said, especially those that have needles or nuts.

In northeast Ohio, beech and oak trees are likely to have mushrooms growing with them, as well as birch, aspen, willow and cottonwood.

The tree provides carbohydrates that the fungus uses for food. The mushrooms break down material and provide minerals and nutrients to the trees. Sturgeon said. Its a give-and-take process. Without mushrooms, we wouldnt have healthy trees.

Mushrooms are a good food source for insects, snails and turtles as well as some mammals, like squirrels and deer.

Theyre all tied together, he said. Mushrooms are a critical part of the food chain.

Oddly enough, theres no scientific definition for mushrooms; theyre just macrofungi, as opposed to mini fungi, like yeast. More than 2,000 species of mushrooms have been documented in Ohio, but Sturgeon thinks the real number is closer to 3,000. Many types of mushrooms have not been studied or given names yet, he said.

That seems to be one of the goals of new groups of mushroom enthusiasts, who call mycelium the wood wide web. Hot mushroom topics online include mycoremediation, looking into fungi as a way to clean up toxic waste and other environmental problems, and radical mycology, investigating its ability to help the environment and human beings, as in medicine.

Both new and old fans of the fungi agree that identifying mushrooms before eating them is crucial. Some mushrooms are edible, and quite tasty, while others are edible but awful. The compact Russula he brought tastes fishy and stinks, while one thats called Bradley, in West Virginia, also tastes fishy but is delicious, he said.

Some mushrooms are toxic, and a few are deadly. Sturgeon said that In northeast Ohio, there are two common species that can kill you: Destroying angel, which is all white, and deadly galerina, also called autumn skullcap, that have brown or yellowish tops. Other varieties may not be fatal, but can make you very sick, including some of the so-called hallucinogenic mushrooms.

After eating 10 or so, you may find that your digestive system shuts down, he said.

The problem is, so many edible varieties resemble toxic ones, and vice versa. Thats why Sturgeon puts a skull and crossbones at the top of pages describing toxic varieties in his field guides. Poison control centers call Sturgeon often, mostly for kids, sometimes for dogs. Hes also on the Poisons Help: Emergency Identification for Mushrooms & Plants page on Facebook.

Sturgeon said in these cases, its important for parents to send good photos of the suspect mushroom. Pictures should show the cap, both from the top and underneath; the stem, and any other parts, plus one that is cut in half. The insides of some mushrooms turn blue, green or other colors when exposed to air, as Sturgeon demonstrated in his talk.

Unfortunately, panicked adults in these situations often arent thorough in their photography.

Its frustrating when they only have photos of vomit, or a mushroom thats in pieces, Sturgeon said.

Identifying mushrooms is so important, theres even an app for that. Sturgeon spends a lot of time looking at photos of mushrooms that people post on iNaturalist, sometimes identifying 100 or more a day. The site also has maps showing where those kinds of mushrooms have been found.

Of the edible varieties, morels are probably his favorite mushrooms, along with the American parasol. Sturgeon emphasized the need to always cook mushrooms. Even some types of morels will make you sick if you eat them raw, he said. Sturgeon also likes chanterelles, with their bright orange color and many wrinkles.

They taste fruity and have a nice smell, like apricots, he said.

Some people candy them and put them on ice cream or sorbet, but he just adds some maple syrup or honey after cooking them in butter.

Morels and hen-of-the-woods, called sheepshead locally, are the prizes around here, but chanterelles are catching on, he said.

Sturgeons dad took him mushroom hunting as a kid, but he really got interested in the 1970s when his wife, Trish, got him a mushroom book for Christmas. He joined the North American Mycological Association and the Ohio Mushroom Society, where he found a mentor.

He used to shoot photos of mushrooms on film and mail them to his mentor, who would mail back the identifications.

Among the books and field guides hes authored are Mushrooms of the Northeast and Appalachian Mushrooms: A Field Guide. Those in the southeast corner of Ohio can be a little different than those in the rest of the state, like the cauliflower mushroom that grows on conifers.

But theres also a big overlap, he said. Mushrooms dont know borders.

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AgeX Therapeutics Inc. (NYSE:AGE) stock surged in the premarket trading session; heres why – Market Globalist

Posted: May 13, 2021 at 1:47 am

In the premarket trading session, at last check AGE stock surged by 7.2% to $1.34. AGE stock closed previous session at $1.25 losing -3.85%. The AGE stock volume traded 80189.0 shares. In the past year up-to-date AGE stock had jumped by 64.47% while in the past week the shares shed -6.02%

On 1st April 2021, the AgeX Therapeutics Inc. announced the business update and release of financial results of the fourth quarter 2020.

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The company had recently entered into a supported sponsored collaboration with The Ohio State Universit. This coordination is focused on the utilization of AgeX-BAT1 in mice. This candidate is based on AgeXs brown adipocyte tissue (BAT) cell treatment. The purpose of it is to decide if transplantation of AgeX-BAT1 cells may improve cardiovascular capacity, diet-incited obesity and metabolic wellbeing including glucose digestion.

AgeX has also partnered with a biopharmaceutical organization creating embryonic stem cell (ESC) derived mesenchymal stem cells (MSCs) known as ImStem Biotechnology Inc. The collaboration was based on non-exclusive sublicense that will contain royalties for the utilization of AgeXs clinical-grade ESC line ESI-053 to determine ImStems investigational MSC item candidate IMS001 for improvement in COVID-19 as well as acute respiratory distress disorder (ARDS) from different causes. ImStems MSC item up-and-comer IMS001 is based on AgeXs stem cell line ESI-053. In March 2020, IMS001 acquired FDA IND approval to start a human research in different sclerosis.

AgeX reported on March 12, 2021 the online distribution of research paper identifying with regeneration, maturing, and cancer in bioRxiv. The paper presents interesting information identifying with mechanisms that cells may use during the recovery period. The paper uncovers changes in specific qualities that may keep recovery from happening in aged people. It additionally gives proof that the group of qualities might be engaged with a wide exhibit of human tumors.

The fourth quarter and full year result for the year 2020 has overall positively improved as compared to the year 2019. When we look at the highlights posted by the company we see that the company for the fourth quarter of 2020 reported Total Revenues of $0.5 million. While for the year ended December 31, 2020 the total revenues were $1.9 million, compared to $1.7 million in the same period in 2019. The company increased the Operating expenses by $2 million to $12.4 million in full year 2020 as compared to 2019. The net loss attributable for AGE stock equals $0.29 per share in 2020 compared to $0.33 per share for the period 2019.

AgeX Therapeutics, Inc.,is a biotechnology company that specifically centers around the design, developmentand commercialization of novel therapeutics. These novel treatments areprimarily for human aging and degenerative illnesses. The organization was established in 2017 and is situated in Alameda,California.The company has its operations deployed in the market of United States. The organizations lead cell-based helpful candidate being developed consists of AGEX-BAT1, a cell treatment product for the treatment of different age-related metabolic issues, for example, Type II adult on-set diabetes.AgeX Therapeutics, Inc. has a research coordinated effort with the University of California, Irvine on neural foundational cell research program for Huntingtons sickness and other neurological disorders; and Sernova Corp.

The company also provides AGEX-VASC1, a cell-based treatment to reestablish vascular aid in ageing ischemic tissues, like the ischemic heart. Its lead drug-based investigative candidate is AGEX-iTR1547, for restoration of regenerative potential in a range of aged tissues affected by degenerative infections. Furthermore, the organization markets human embryonic stem cells; and GeneCards Database Suite, including genomic analysis calculations and analysis instruments for use by specialists at drug and biotechnology organizations, and different establishments.

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AgeX Therapeutics Inc. (NYSE:AGE) stock surged in the premarket trading session; heres why - Market Globalist

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University Hospitals treats first cancer patient in Ohio with "game changing" CAR T therapy – News 5 Cleveland

Posted: at 1:47 am

CLEVELAND When 61-year-old Ken Anderson was diagnosed with Multiple Myeloma 3 years ago, he didnt know what to expect.

It kind of hits you. It hits you hard, he said. Its a blood cancer, and its in your bone marrow, and it degenerates your bones is what it does.

The cancer is incurable, but treatable.

You live with it and you have to have many rounds of chemotherapy to keep the myeloma at bay, said Dr. Ted Teknos, the president of University Hospitals Seidman Cancer Center.

With so many unknowns, the dad of 4 girls and grandfather of 2 knew one thing, he was going to fight.

You just have to look to the road ahead, he said.

For the past 3 years, that road has been filled with ups and downs and countless rounds of chemotherapy treatments and even a bone marrow transplant.

They give you your stem cells back and those regenerate and lasted for about 6 months, and then there was a relapse, said Anderson.

Through it all, he remained hopeful for a medical breakthrough. He read about the research and followed up on the results of clinical trials in something called CAR T therapy.

I didn't know how far out that would be. It didn't say how far out it was. It sounded, to me, something like 10 or 20 years.

But it wasnt 20 years, the FDA approved CAR T therapy for Multiple Myeloma patients, and University Hospitals is the first in Ohio to treat patients with it. Anderson, who is from Kirtland, is the first patient in Ohio to receive it.

These treatments, now, are available for those that have run out of options, said Dr. Teknos.

Dr. Teknos compared the treatment to something straight out of a science fiction movie.

In essence, its like a heat-seeking missile for the cells to go find the cancer and eradicate it, he said.

It works by taking a patients own white blood cells, genetically modifying them in a lab and then infusing them back into their body so the patients cells can fight off the cancer cells.

They will engineer them to attack my cancer cells, said Anderson.

Dr. Teknos calls it living therapy.

You're taking living cells out of a patient, you're modifying them, and then you're growing them up in the lab and then re-infusing them back into the patient, he said. It's their own cells that have been modified and fight the cancer.

Dr. Teknos said in clinical trials, about 75% of Multiple Myeloma patients had a response to therapy, and in 1/3 of patients, their cancer went away.

Its really a game changer, said Dr. Teknos. There are patients who literally had weeks to live and then a year and a half later, have no cancer at all.

Andersons cells are currently in the lab. He will receive his infusion next month. He is cautiously optimistic that the next stop on his journey will have him feeling better.

I won't have to be on the chemo anymore, so I'm just back to feeling like myself would be would be really exciting, he said. People who are out there and diagnosed with this, with this disease, know that we are on the cusp of some big things here in the treatment of it, and this is a huge advance.

While Anderson is currently fighting Multiple Myeloma, University Hospitals is also offering a new CAR T cell therapy treatment for patients diagnosed with Diffuse Large B-Cell Lymphoma.

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Weekly line: What the new coronavirus variants mean for vaccines, transmission, and more – The Daily Briefing

Posted: January 20, 2021 at 6:52 pm

News and research regarding emerging new coronavirus variants are moving fast. To help you keep up, here's a 101-level explainer on what the new variants are, where they emerged, and more.

This explainer covers:

By now, we all know that officials reported the first cases of the novel coronavirus, known as SARS-CoV-2, late last year in Wuhan, China. The virus quickly spread throughout the world, touching every continent and nearly every country.

Throughout the pandemic, researchers have been testing samples of SARS-CoV-2 to detect whether the novel coronavirus developed any mutations as it spread, which can occur with RNA viruses such as influenza, HIV, the new coronavirus, and more. By May, scientists had identified at least one mutation, known as D614G, but research on whether the mutation made the virus more transmissible was largely inconclusive. However, by September, researchers had catalogued "more than 12,000 mutations in SARS-CoV-2 genomes," Nature's Ewen Callaway reports.

According to Callaway, many scientists suspected that, if a mutation didn't help the novel coronavirus to spread easier, it likely emerged when the virus was first mutating to jump from animals to humans or from human to human. But scientists didn't think it was likely that the virus would mutate to become more transmissible among humans at this point, because "[a]t a time when nearly everyone on the planet is susceptible, there is likely to be little evolutionary pressure on the virus to spread better, so even potentially beneficial mutations might not flourish," Callaway writes.

Put another way, William Hanage, an epidemiologist at the Harvard T. H. Chan School of Public Health, told Callaway, "As far as the virus is concerned, every single person that it comes to is a good piece of meat. There's no selection to be doing it any better."

Fast-forward just a few months, however, and officials in the United Kingdom had some troubling news. On Dec. 8, 2020, British officials announced that scientists had discovered a new, potentially far-more-contagious variant of the novel coronavirus in the United Kingdom. U.K. Prime Minister Boris Johnson and England's CMO Chris Whitty said scientists identified the new variantlabeled B 1.1.7through Public Health England's genomic surveillance. U.K. officials said the variant had about 20 mutations, including several that affect how the virus attaches to and infects cells in the body. Specifically, one of the mutations on B 1.1.7, called N501Y, improves how the spike protein of the viruswhich is the part of the virus that infects human cellsattaches to the ACE2 receptor on human cells, meaning the virus is more likely to infect cells successfully.

Johnson at the time said scientists believed the new variant was more infectious than the original version of the novel coronavirus, and the variant quickly became the dominant type of SARS-CoV-2 spreading throughout the country. According to recent research, B.1.1.7 appears to be about 56% more contagious than the unmutated virus, and researchers have now detected the variant in at least 45 countries, including the United States.

In the United States, researchers so far have detected B.1.1.7 in a handful of states, but experts say its possible the new variant is more widespread than we know. That's because the United States currently lacks a nationwide system for tracking how coronavirus genomes mutate, with researchers doing genome sequencing on fewer than 3,000 samples a week. Many of the Americans infected with B.1.1.7 haven't traveled recently, which suggests that the variant is already circulating throughout the country via community spread, officials have said.

But B.1.1.7 isn't the only new coronavirus variant on scientists' radar. They've also discovered a new variant in South Africa, called B.1.351, that similarly features the N501Y mutation, as well as an additional mutation called E484K. The E484K mutation occurs on a part of the spike protein that's instrumental in attaching the virus to ACE2 receptors, and it's also been found in a coronavirus variant circulating in Brazil.

Additionally, on Wednesday, researchers in Ohio reported identifying two additional new variants, including one that appears to be more transmissible than the original version of SARS-CoV-2 and may have originated in the United States. Not much is known about those new variants at this time, but researchers said the variant that may be more transmissible has become the dominant variant circulating in Columbus, Ohio.

Experts also predict that we could see additional more-contagious new variants of the novel coronavirus as more people gain immunity to the pathogen. Salim Abdool Karim, chair of South Africa's Covid-19 ministerial advisory committee, told the Financial Times, "We're going to see this occur more commonly now than in 2020, as we vaccinate and as more people are infected," because the virus will evolve to help it continue to spread.

FDA has warned health care providers that the new variants might elude some tests for the novel coronavirus and trigger false-negative results. FDA said that likelihood is low, but it noted three tests Applied DNA Sciences' Linea test, Mesa Biotech's hand-held Accula test, and Thermo Fisher's TaqPath combo kitthat might produce inaccurate results because of the variants' mutations. In a statement, FDA Commissioner Stephan Hahn said the agency is "working with authorized test developers and reviewing incoming data to ensure that health care providers and clinical staff can quickly and accurately diagnose patients infected with SARS-CoV-2, including those with emerging genetic variants."

But there is some good news: So far, there's no evidence that the new coronavirus variants cause more severe illness or higher mortality than the original version of the virus.

And although experts have expressed concern that some variants may be more resistant to current treatments for Covid-19, they say there's no evidence indicating as much so far, at least for the currently known variants.

For instance, Gilead Sciences is testing its Covid-19 treatment remdesivir on both B.1.1.7 and B.1.351, but the company's CEO, Daniel O'Day, on Monday said he believes remdesivir will be effective against them. "Remdesivir works at the source in the cell where the virus replicates, and what we know is, in these new variants, that part of the cell is not changing at all," he said.

It's more uncertain, however, whether monoclonal antibody treatments for Covid-19 will be effective against variants that have mutations to the portion of the novel coronavirus's spike protein that's targeted by those treatments. As a result, Eli Lilly CEO Dave Ricks on Tuesday told CNBC that he expects the company's antibody drug will be effective against B.1.1.7, but he's not sure whether it will work against B.1.351.

That's because B.1.351 "has more dramatic mutations to that spike protein, which is the target. Theoretically, it could evade our medicines," Ricks said. He added that Lilly intends to work with FDA to test different versions of the company's antibody drug against the new variants to gauge their effectiveness.

Separately, George Yancopoulos, Regeneron's research and development chief, on Monday said the company's antibody cocktail drug for Covid-19 could be effective against new coronavirus variants. "We think having a cocktail makes it more likely you'll be able to deal" with the new variants, because "[i]t reduces the likelihood that a single variant can become resistant to both antibodies in the cocktail," he said.

When it comes to vaccines, a study conducted by Pfizer and scientists from the University of Texas Medical Branch suggests that Pfizer's and BioNTech's coronavirus vaccine is effective in neutralizing the novel coronavirus with the N501Y mutation. That study hasn't yet been peer-reviewed, and it didn't look at the E484K mutation. Pfizer has said it plans to test its vaccine against the E484K mutation in coming weeks.

According to Medical News Today's Maria Cohut and Yella Hewings-Martin, experts have said Moderna's Covid-19 vaccine should be similarly effective against new variants.

Some studies have shown that viruses with the E484K mutation are not recognized as well by antibodies as other forms, meaning coronavirus variants with the E484K mutationsuch as B.1.351could potentially bypass immune protection. According to a pre-print paper from researchers at the Fred Hutchinson Cancer Research Center, the location of the E484K mutation is "the site of most concern for viral mutations." Overall, the paperwhich tracked how the antibodies in people who had recovered from Covid-19 fared against different variantsfound that while there was variability among the samples, some people experienced as much as a 10-fold drop in neutralization against variants with E484K.

Overall, however, while experts are concerned about the recent mutations, they say it's not likely that they'll render current Covid-19 vaccines and treatments entirely ineffective. According to experts, it would take yearsrather than monthsfor the novel coronavirus to mutate to a point where people's antibodies against the virus or currently authorized vaccines would become ineffective.

And as CDC recently explained, the United States' currently authorized Covid-19 vaccines "produce a 'polyclonal' response that targets several parts of the spike protein. The virus would likely need to accumulate multiple mutations in the spike protein to evade immunity induced by vaccines or by natural infection."

Jesse Bloom, an evolutionary biologist at the Fred Hutchinson Cancer Research Center, told the New York Times' Apoorva Mandavilli, "No one should worry that there is going to be a single catastrophic mutation that suddenly renders all immunity and antibodies useless." Noting that even the influenza virus needs between five and seven years to gather all the mutations necessary to evade immune recognition entirely, Bloom continued, "It is going to be a process that occurs over the time scale of multiple years and requires the accumulation of multiple viral mutations. It's not going to be like an on-off switch."

Regardless, vaccine manufacturers say they'll be monitoring whether they need to tweak their vaccines to address the new variants. For instance, BioNTech CEO Ugur Sahin recently said that, if the company's vaccine starts to lose its efficacy because of new variants, his company would be able to adjust its vaccine accordinglyand in an even shorter timeframe. "[T]he beauty of the messenger mRNA technology [that the BioNTech/Pfizer vaccine uses as a platform] is we can directly start to engineer a vaccine that completely mimics this new mutation and we could manufacture a new vaccine within six weeks," he said.

Since the United States doesn't yet possess the robust surveillance program needed to determine how widespread new coronavirus variants actually are in America, public health experts say the country essentially is "flying blind" when it comes to addressing them, the Times' Matt Apuzzo, Selam Gebrekidan, and Mandavilli report. Experts say implementing a national surveillance system in the United States would allow public health officials to warn people in areas affected by the new variants and quickly implement measures meant to stem their spread.

Without taking action to stop the new variants, and particularly B.1.1.7, they could become the dominant variants circulating in the United States within the next few weeks to a couple months, public health experts say. And while it's currently too soon to tell how the variants will affect the United States' coronavirus epidemic, experts are concerned more-contagious variants could accelerate the country's new case rate.

That's especially concerning because the United States already is seeing persistently high levels of hospitalizations and deaths tied to the novel coronavirus. Hospitals in some areas of the United States already are overwhelmed by a recent influx of Covid-19 patients, with some having to ration care. If the country sees new cases of the coronavirus and related hospitalizations accelerate even more, the situation could become increasingly diresimilar to what's happened in the United Kingdom, experts fear.

"Epidemiological models and Britain's experience indicate that, while only a few cases of the variant have been identified in the United States, it will likely become our dominant strain within a few months," Ashish Jha, a general internist and professor of global health at the Harvard T.H. Chan School of Public Health, and Robert Wachter, chair of the department of medicine at the University of California-San Francisco, write in a Washington Post opinion piece. And "a more infectious virus means more cases, which means more hospitalizations and deaths," they add.

As such, in addition to ramping up surveillance of the new variants in the United States, health officials say Americans need to double down on evidence-backed public health measures that curb the novel coronavirus's spread, such as wearing face masks, social distancing, and frequent hand washing.

"We don't have any evidence that the new variant can fundamentally evade masks, social distancing, or the other interventions," Jeff Barrett, director of the Covid-19 genomics initiative at the Wellcome Sanger Institute in the United Kingdom, told BBC News' Helen Briggs. "[W]e just need to apply them more strictly."

Further, health officials say federal and state health officials must work to get as many Americans vaccinated against Covid-19 as quickly as possible.

"We are in a race against time," Jennifer Nuzzo, an epidemiologist with the Johns Hopkins Center for Health Security, told the Post's Joel Achenbach and Ben Guarino. "We need to increase our speed in which we act so that we don't allow this virus to spread further and allow [B.1.1.7] to become the dominant one in circulation. The clock is ticking."

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Forge Biologics Announces FDA Clearance of Investigational New Drug Application for Phase 1/2 Clinical Trial (RESKUE) of FBX-101 Gene Therapy for…

Posted: January 9, 2021 at 7:54 pm

COLUMBUS, Ohio, Jan. 4, 2021 /PRNewswire/ --Forge Biologics Inc., a gene therapy manufacturing and development company, today announced that the company has received FDA clearance of the Investigational New Drug (IND) to initiate a Phase 1/2 clinical trial evaluating its novel, first-in-human AAV gene therapy, FBX-101, for patients with Krabbe disease. FBX-101 is the company's first therapeutic program to receive an IND which also received Institutional Biosafety Committee (IBC) and Institutional Review Board (IRB) approvals required prior to any patient enrollment. This marks a major step forward in building out the company's hybrid model as a gene therapy manufacturing and development engine.

Krabbe disease is a rare and fatal pediatric leukodystrophy affecting about 1-2.6 in 100,000 people in the United States. Patients are born with mutations in the galactosylceramidase(GALC) gene, which encodes an enzyme that helps break down lipid molecules inside cells. This results in the toxic buildup of psychosine, a lipid molecule that can't be degraded in cells, particularly in cells in the brain and peripheral nerves, and leads to toxic levels that cause cell death and myelin loss. The disease initially presents as physical delays in development, muscle tightness and irritability, and rapidly advances to difficulty swallowing and breathing, loss of vision and hearing, and increasing cognitive degeneration. Early onset, or "Infantile", Krabbe disease cases usually results in death by age 2-4 years, while later onset or "Late Infantile" cases have a more variable course of progressive decline. There is currently no approved treatment for either form of Krabbe disease.

FBX-101 is an adeno-associated viral (AAV) gene therapy administered after hematopoietic stem cell transplant (HSCT), that delivers a functioning copy of the GALC gene, the enzyme needed to prevent the buildup of psychosine in myelinated cells of both the central and peripheral nervous system. FBX-101 has been shown to correct the central and peripheral myelination deficits, significantly improve the behavioral impairments associated with Krabbe disease in animal models, and drastically improve the lifespan of treated animals. The use of transplant and intravenous AAV gene therapy infusion has the potential to overcome some of the immunological safety challenges of traditional AAV gene therapies.

"The ground-breaking treatment approach using HSCT and AAV gene therapy, initially developed by Dr. Escolar, has safely demonstrated superior benefits in preclinical animal studies of Krabbe disease than either treatment method alone," said Timothy J. Miller, Ph.D., Forge's CEO, President, and Co-Founder. "We are grateful for the FDA's engaged review and allowance of the IND, and look forward to enrolling patients very soon."

FBX-101 is the culmination of nearly 20 years of Krabbe disease research, led by Maria Escolar, M.D., M.S., Chief Medical Officer at Forge Biologics and the pioneer for evaluating the natural history and new treatment approaches for patients with Krabbe disease. "This combination approach is extremely exciting because the preclinical data demonstrate significant correction of survival, behavior and neuromuscular function in animal models compared to either transplant or AAV treatment alone. This is a significant milestone for Krabbe disease families suffering from this deadly disease," said Dr. Escolar.

The initiation of the RESKUE trial in Forge's gene therapy pipeline continues Forge's momentum within the biotechnology industry in Columbus, Ohio, bringing positive impact to both Ohio and the global rare disease community.

Patients and families can learn more about clinical trials for FBX-101 by visiting https://www.forgebiologics.com/science/#krabbe.

About Krabbe diseaseKrabbe disease is a rare, pediatric leukodystrophy affecting about 1-2.6 in 100,000 people in the U.S. and is inherited in an autosomal recessive manner. Krabbe disease is caused by loss-of-function mutations in the galactosylceramidase (GALC) gene, a lysosomal enzyme responsible for the breakdown of certain types of lipids such as psychosine. Without functional GALC, psychosine accumulates to toxic levels in cells. The psychosine toxicity is most severe in the myelin cells surrounding the nerves in the brain and in the peripheral nervous system, eventually leading to the death of these cells. The disease initially manifests as physical delays in development, muscle weakness and irritability and advances rapidly to difficulty swallowing, breathing problems, cognitive, vision and hearing loss. Early onset or "Infantile", Krabbe disease cases usually results in death by age 2-4 years, while later onset or "Late Infantile" cases have a more variable course of progressive decline. There is currently no approved treatment for Krabbe disease.

About FBX-101Forge is developing FBX-101 to treat patients with infantile Krabbe disease. FBX-101 is an adeno-associated viral (AAV) gene therapy that is delivered after a hematopoietic stem cell transplant. FBX-101 delivers a functional copy of the GALC gene to cells in both the central and peripheral nervous system. FBX-101 has been shown to functionally correct the central and peripheral neuropathy and correct the behavioral impairments associated with Krabbe disease in animal models, and to drastically improve the lifespan of treated animals. This approach has the potential to overcome some of the immunological safety challenges observed in traditional AAV gene therapies.

About Forge BiologicsForge Biologics is a hybrid gene therapy contract manufacturing and therapeutic development company. Forge's mission is to enable access to life changing gene therapies and help bring them from idea into reality. Forge has a 175,000 ft2 facility in Columbus, Ohio, "The Hearth", to serve as their headquarters. The Hearth is the home of a custom-designed cGMP facility dedicated to AAV viral vector manufacturing and will host end-to-end manufacturing services to accelerate gene therapy programs from preclinical through clinical and commercial stage manufacturing.By taking a patients-first approach, Forge aims to accelerate the timelines of these transformative medicines for those who need them the most.

For more information, please visit https://www.forgebiologics.com.

Patient, Pediatrician, Genetic Counselors & Family Inquiries

Dr. Maria EscolarChief Medical OfficerForge Biologics Inc.[emailprotected]

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The Rise of Steve Sarkisian … And the Decline of the Man Who Got Him Here – Sports Illustrated

Posted: at 7:54 pm

Memories come to him like flashes of light.The old football coach reaches back in his mind, grips what he can and hurls it into the air.

One word here. Another there.

Football.

Volleyball.

Catalina.

John Featherstonebetter known simply as Feather, the fiery, passionate and championship-winning coach who for three decades ruled California junior college football ranksis in a memory care facility near his home in Redondo Beach.

The 71-year-old last coached football in 2015, last played volleyball last year and last visited Catalina Island on Aug. 5, two weeks before a seizure left him listless and hospitalized. Seven years into dealing with Alzheimers, the latest medical event further hampered a once mighty man.

Joe Robbins/Getty Images

Physically, he is mostly fine, having now recovered from the seizure. He laughs, smiles and even dances to old hits like Sweet Caroline. He can and has thrown and caught a football. He hugs, he kisses and he still flirts with the ladies.

Mentally, he is not fine. He has been unable to use a phone for three years. Well before that, he stopped driving altogether. The most simple tasks, such as removing a shirt from his dresser and slipping it onto his torso, are impossible. Months ago, he stopped riding his bike to the beach because he would lose it so often.

His speech is now slipping, and communicating with him through FaceTime has grown difficult. Because of the pandemic and an outbreak at the facility this fall, no one from his family has seen him since November. The familys financial resources are dwindling, putting his stay at the care home at risk.

Featherstones situation got tougher on Saturday. He tested positive for COVID-19. Hes now further isolated from the world, quarantined in a separate wing of the facility in which hes spent the last several months, his family hoping he does not develop symptoms.

They FaceTime with him quite often. He says a word here or there.

Football.

Volleyball.

Catalina.

But there is another word he utters. The old football coach reaches back into his memory bank, recalling the young baseball player who he persuaded to play football and the software salesman he first hired as a coach.

Sark.

***

Steve Sarkisian kneels with another player while El Camino College coach John Featherstone smiles in the background.

Courtesy of Ryan Winkler

He used to call him Stevie, not Sark.

In 1993, when Steve Sarkisian arrived at El Camino College, a junior college football powerhouse on the outskirts of Los Angeles, he was a failed college baseball player whod transferred from USC before completing his freshman year.

He was done with football, or so he thought.

Then John Featherstone entered his life as his new P.E. professor. Having watched Sarkisian play high school ball at nearby West Torrance, the coach badgered Stevie to give football another crack.

So during the final week of spring practice that year, Sarkisian relented. He agreed to throw passes at practice. Two years later, he left El Camino as its most decorated passer, then signed a scholarship with BYU, starred as a record-breaking QB for LaVell Edwards and then found himself back in the South Bay area selling software.

He casually dropped by an El Camino practice one day and there was his old P.E. teacher, relentlessly pursuing him again. Come coach! Featherstone told him, recalls Gene Engle, a longtime assistant at El Camino.

Sarkisian began coaching quarterbacks, eventually called plays from the booth and, after that season, was hired at USC as a graduate assistant.

The rest, Engle quips, is history.

Sarkisian is the most accomplished branch on Featherstones coaching tree, made more certain with his hire over the weekend as the new head coach at Texas. It is truly a second-chance story, the details of which have been exhaustively reported. Fired at USC for substance use. Checked into a rehab clinic. Cleaned up his act. And then joined forces with Nick Saban at Alabama to assemble one of the countrys most explosive offenses.

Before beginning full-time duties with the Longhorns, hell lead the No. 1 Crimson Tide (120) into the national championship game next Monday against Ohio State (70) in Miami. Across the country, some 2,700 miles away, his old coach, the man who sparked his career in the sport, cannot comprehend what his ex-pupil has accomplished.

I dont think he knows whats happening, says Diane Featherstone, the coachs wife of seven years.

The two married just before John Featherstone was diagnosed with Alzheimers. This is a late-life love story that began with a courtship in 2009 and still hums along today. Diane, 77, cared for John until she couldnt. She and Johns four daughters agreed to send him to a home earlier this fall after he recovered from the seizure.

Diane hasnt seen her husband since Nov. 21.

I used to go to see him and hed cry in my arms, he was so happy to see me, she says. Now I cant do that and its killing me. I see him on FaceTime and thats it. Sometimes he knows me and can focus. But if the nurse leaves the room, he doesnt know where to look. I tell him I love him all the time. One time he told me, I love you, too.

Signs of the disease were obvious in Johns final two seasons as coach at El Camino in 2014 and 15. Assistants noticed him repeating himself. Hed forget a players jersey number or name. Engle, his right-hand man for 31 seasons at El Camino, assumed many of his friends duties late in his tenure.

When healthy, Featherstone reminded Engle most of Lou Holtz, a small figure in stature who inspired such stirring passion among his players and exuded so much intensity.

But that man, the one who won 214 games, 11 conference championships, two state titles and the 1987 national championship, was fading. The guy who inspired thousands of playersincluding ones who went on to the NFL like Marcel Reece, Matt Simms and Antonio Chatmandelivered the most fiery pregame speeches and called nearly every offensive play, was deteriorating in front of everyones eyes.

That was a tough part to watch, says Ryan Winkler, an assistant at El Camino who played for Featherstone and was on staff for his final years. He was still swimming in the ocean each morning, playing volleyball and coming to practice. He was healthier physically than anybody out there including players. Mentally, he wasnt there.

Alzheimers is a brutal disease. Brain cells themselves degenerate and die, eventually destroying memory and other mental functions. Medications and management strategies may temporarily improve symptoms, but no cure exists. The end result is almost always the same. Life expectancy after diagnosis is about three to 11 years, according to the Mayo Clinic.

Ill be honest, Winkler acknowledges, a part of me wants to remember him for how he was.

For years, family and friends kept his diagnosis a secret. He was in denial about the illness for a while, says Diane, carrying on with life and coaching as if nothing were wrong. The two didnt discuss the topic. Alzheimers wasnt mentioned.

When doctors found traces of trauma in Featherstones brain which they say likely stem from injuries sustained in childhood and while playing football, they didnt talk much about that either. Concussions, says Diane, who holds no resentment toward a game that her husband built his career and life around (every Saturday, you can still find her watching college football from her couch).

But inaction was not an option. Last fall, they publicly revealed their secret.

We have no choice, Diane says.

Engle and Diane recently began a GoFundMe page to keep John at Belmont Village Senior Living. While that effort has generated nearly $80,000much of it from former playersits only enough to keep him at Belmont for seven more months, give or take.

The memory care facility provides John more amenities than a normal senior home. He takes medication and participates in memory exercises to slow the deterioration. Its a more comfortable community setting versus just sitting at a senior home and staring at a TV, Engle says.

When the GoFundMe first went live, the outpouring was jaw-dropping. Some gave $10, others $500 and several donated four figures. The donations often came with a phone call, email or face-to-face interaction.

As hard as this disease is, it has brought a lot of people out sharing so many stories about him that we may have not heard, says Keegan Felix, one of Featherstones daughters. We have had players come up to us and say, Your dad saved my life. I would have been dead or in jail.

Some donations came from players who never even lasted at El Camino.

You start going down the GoFundMe list and there are guys on there that youd never think would be on there, says Derrick Deese, a former NFL offensive lineman who played for Featherstone at El Camino. They now get itthey learned a lot from him. It wasnt just about football. It was bigger than football.

Through Deese, the family got a message to Sarkisian about his former coachs condition and the fundraising campaign. A day afterward, an anonymous four-figure donation appeared on the GoFundMe page, says Deese.

***

In 2013, John Featherstone visited then-Washington coach Steve Sarkisian in Seattle.

Courtesy of Diane Featherstone

Feather and Sark were close for years. But after Sarkisians firing at USC, communication between him and other members of the El Camino staff stopped, Engle says. The last time the two saw each other was at a spring practice on USCs campus in 2015, a few months before Sarkisian lost his job for alcohol-related issues. A couple of years before that, the Featherstones traveled to a Washington Huskies game in Seattle while Sarkisian was coach. Sarkisian even allowed his old coach to speak to the team. Diane was there as her husband, in the early stages of his secret disease, delivered an impassioned address.

Featherstone watched the game from the field, once again sharing a sideline with his former player and assistant. The trip was significant. It kicked off Diane and Johns retirement planto travel each weekend to a football game, exploring the city and campus. The retirement plan never really materialized. The disease took it from them.

And now, years later, a virus has taken away their ability to even see one another.

Its heartbreaking, Diane says. But whats interesting is over the last year hed only bring up certain names. He always said Sark. Wonder where Sark is. Whats Sark doing? As we were watching football, Id tell him that Sark is coaching that game.

As his condition has deteriorated, he could only recently utter his name.

Sark.

Diane believes that the simplicity of the wordfour letters and a single syllablemakes it conducive for her husband to pronounce.

Anytime hed see him on TV, hed say Gosh, look at him! Felix recalls. He was so proud of him.

John Featherstone smiles for the camera during an outing with his wife Diane in October.

Courtesy of Diane Featherstone

In the most recent FaceTime with Featherstone, Diane asked her husband how he was feeling. He mumbled something, and according to the nurse, he said, "Happy."

She's attempted to explain to him the details of Sark landing his big new job, but whether he understood or not remains a mystery. In the past, when he was more coherent, he'd watch football, see Sarkisian on screen and immediately sit up. He'd get anxious and believed that he should be there with his pupil. "We've gotta go now!" he'd tell Diane.

In many ways, Featherstone saw himself in Sarkisian. They're not the most physically gifted men, but natural-born leaders who could captain a huddle, deconstruct a defense and scheme offensively.

It was so fun to get on the board with Stevie. He was like a mad scientist, Featherstone said in an interview in 2017 with 247Sports. I could tell he was a leader. He didnt want to be in the back of the roomhe wanted to be in the front. I was that guy, too.

That was one of the last public recorded interviews in which Featherstone participated. In the video, he is seated on a bench near the Redondo Beach Pier. Hes smiling incessantly while speaking about his former quarterback, the Pacific Coast breeze blowing through his slicked-back hair. Its a lasting image. At the time, few knew about the disease slowly encroaching on his life.

In November 2019, in a ceremony that he attended, El Camino named its football field after Featherstone. He came bursting out of the tunnel with the 2019 Warriors and their new coach, racing onto Featherstone Field as if he were still leading the squad.

A bronze plaque now hangs at the stadium detailing Featherstones on-field, numerical accomplishments. But it is the plaques six other words that reverberate.

Mentor, teacher, coach and loyal friend, it says.

Even without his presence in public life, John Featherstones legacy lives on through those he inspired. At the top of the list is one of college footballs most brilliant and innovative minds: the new head coach at the University of Texas.

Sark.

Read more of SI's Daily Cover stories here.

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Raleigh man delivers stem cells to patients around the world – WRAL.com

Posted: November 28, 2020 at 3:55 pm

By Adam Owens, WRAL anchor/reporter

A 74-year-old Raleigh man spends an average of two weeks a month traveling around the world delivering stem cells or bone marrow to patients as part of Be The Match, a volunteer-based donor program.

According to Troy "Davis" Moore, Be The Match uses a database of 135 countries to find life-saving bone marrow or stem cells for patients with leukemia and other blood diseases. The stem cells are delivered from donors to patients around the world by volunteers like Moore.

Moore said, when he retired 17 years ago, gardening and working around the house just wasn't enough. His friend, who was already a volunteer courier with Be The Match, told him about the opportunity.

To date, Moore has logged more than 5,000 hours as a volunteer courier. He has traveled as far as London, Barcelona, Croatia, Portugal, Singapore and Taiwan.

On Thanksgiving week, Moore will travel to South America to pick up blood stem cells and deliver them to a patient in the United States. He had to get a rapid COVID-19 test before his trip.

"It's been a lot more challenging during COVID-19 because the rules have changed so much in these countries," said Moore, explaining he recently ran into some trouble in Croatia when he hadn't had a coronavirus test in 72 hours.

Moore said, although he doesn't get to meet the families he helps due to confidentiality, the job is incredibly special. In an interview with WRAL's Adam Owens, Moore described a trip he made on Christmas Day, 10 years ago, to deliver bone marrow from the United Kingdom to a hospital in Columbus, Ohio.

Moore said a nurse was walking him through the hospital hallways when she tapped on his shoulder and pointed to a patient room. Inside, he saw the parents of a child waiting for a transplant. "I have children and I could only imagine," Moore said. "They were just pacing down the room, waiting for it."

Moore said he plans to keep traveling until he can't anymore. Volunteering works well for him, he said, especially now that his children are grown.

Some people might get caught up in the adventure of travel, Moore said, but he's usually only in another country for one day.

"At some point, you realize that's not what it's all about," he said. "It's about getting [a cure] to someone."

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A real life Superman celebrates 5 years of survival from one of the deadliest cancers – Newswise

Posted: at 3:55 pm

Newswise CLEVELAND Three college graduations. Three family weddings. The births of two grandchildren.

Andy Superman Simon has cherished each of these milestones since he was diagnosed five years ago with a glioblastoma multiforme (GBM grade 4), one of the deadliest and most challenging cancers to treat. GBM patients typically survive an average of 12-15 months. Only 6.8 percent of GBM patients survive five years, according to the National Brain Tumor Society.

But the Superman of University Hospitals Seidman Cancer Center who memorably donned a full costume for his final treatment in September 2016 and is free of cancer today with no recurrence is anything but typical.

I feel incredible, says Simon, now 56. I flew through treatment with ease, because I had the best team and the best surgeon. The way I see it, I had cancer, I dont have it.

The crushing headache, similar to a migraine yet inexplicably and mysteriously different, struck early one morning in November 2015. Pulling out of his driveway to head to the ER, Simon was equidistant from two different hospital systems. He and his wife believe that fateful turn to come to UH Ahuja Medical Center, and then UH Seidman Cancer Center, has made all the difference.

If we hadnt gone to UH, I honestly believe in my heart that Andy wouldnt be here today, said Amy, Simons wife.

Neurosurgeon Andrew Sloan, MD, Director of UHs Brain Tumor & Neuro-Oncology Center and the UH Seidman Center for Translational Neuro-Oncology, diagnosed the large mass in Simons brain as a GBM. He performed a craniotomy on Simon using 5-Aminolevulinic Acid (5-ALA), an experimental agent that improves the surgeons ability to identify the tumor. Dr. Sloans own surgical trial assessing this agent was one of only a handful of studies in the United States at the time, though it is now approved for use throughout the US by the FDA. Simon took the 5-ALA prior to surgery, which causes the cancer cells to glow hot pink, for more complete removal of these aggressive, invasive tumors.

Radiation and chemotherapy are the standard of care following a craniotomy for GBM.

Simon also took advantage of a novel phase I clinical trial that involved genetically engineering his own blood cells to express a mutant protein that made them more resistant to chemotherapy enabling him to safely withstand steadily higher doses of toxic chemotherapy through six rounds. While this phase I trial was designed only to show safety and feasibility, the median survival of the participants was 3.3-fold higher than anticipated based on case-matched historical controls with GBM undergoing standard treatment.

A new clinical trial, funded by a $2.3 million grant from the National Cancer Institute and based on the gene therapy Simon participated in, will open at UH Seidman Cancer Center in the next few months.

Andy has been a champion, Dr. Sloan says of the poster-boy for this trial, noting that five-year GBM survivors commonly experience recurrence. Hes a real fighter.

This treatment is really a game-changer. This could be the new standard of care. Its really exciting and very promising.

For the last several years, Simon has celebrated with a big party complete with a photo display of his milestones. He was planning a blowout celebration this year until the pandemic struck.

There is hope, says Simon. I have too many things to fight for, and to live for. Ive gotten too far. Im going to be a statistic for the other side. Every day is a milestone really.

###

About University Hospitals / Cleveland, Ohio

Founded in 1866, University Hospitals serves the needs of patients through an integrated network of 19 hospitals, more than 50 health centers and outpatient facilities, and 200 physician offices in 16 counties throughout northern Ohio.The systems flagship academic medical center, University Hospitals Cleveland Medical Center, located in Clevelands University Circle, is affiliated with Case Western Reserve University School of Medicine. The main campus also includes University Hospitals Rainbow Babies & Children's Hospital, ranked among the top childrens hospitals in the nation; University Hospitals MacDonald Women's Hospital, Ohio's only hospital for women; University Hospitals Harrington Heart & Vascular Institute, a high-volume national referral center for complex cardiovascular procedures; and University Hospitals Seidman Cancer Center, part of the NCI-designated Case Comprehensive Cancer Center. UH is home to some of the most prestigious clinical and research programs in the nation, including cancer, pediatrics, women's health, orthopedics, radiology, neuroscience, cardiology and cardiovascular surgery, digestive health, transplantation and urology. UH Cleveland Medical Center is perennially among the highest performers in national ranking surveys, including Americas Best Hospitals from U.S. News & World Report. UH is also home to Harrington Discovery Institute at University Hospitals part of The Harrington Project for Discovery & Development. UH isone of the largest employers in Northeast Ohio with 28,000 physicians and employees.Advancing the Science of Health and the Art of Compassion is UHs vision for benefitting its patients into the future and To Heal. To Teach. To Discover.is the organizations unwavering mission. Follow UH on Facebook @UniversityHospitalsand Twitter @UHhospitals. For more information, visitUHhospitals.org.

About University Hospitals Seidman Cancer Center

UH Seidman Cancer Center is the only freestanding cancer hospital in Northeast Ohio, where all clinicians and staff are dedicated to the prevention, diagnosis and treatment of cancer while researching new and innovative treatment options through clinical trials. Nationally ranked cancer care is also available to patients through the 11-country region at 18 community-based locations. Our UH Seidman specialists make up 14 cancer-specific teams focused on determining integrated care plans tailored to patients needs. UH Seidman Cancer Center is part of the National Cancer Institute (NCI)-designated Case Comprehensive Cancer Center at Case Western Reserve University, one of 50 comprehensive cancer centers in the country. Patients have access to advanced treatment options, ranging from a pioneering stem cell transplant program founded more than 40 years ago and a wide range of immunotherapy to the first and only proton therapy center in northern Ohio for adults and children. Go to UHhospitals.org/Seidman for more information.

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The Museum That Fell From the Sky | History – Air & Space Magazine

Posted: at 3:55 pm

Famous museums, like the Guggenheim in New York City or the Louvre in Paris, often reside in imposing buildings. Theresa Rayners USS Shenandoah Museum lives in a refurbished camping trailer towed behind a pickup truck. But inside this humble trailer is a priceless collection of memorabilia recalling the U.S. Navys first rigid airship, all lovingly curated and cared for by this Ohio woman with a passion for history and preservation.

The 680-foot-long USS Shenandoah was the pride of the U.S. Navy when christened in 1923. Its mission was to provide airborne surveillance for the fleet; to prove its capability, in 1924 the Shenandoah embarked on test flights across the United States. Soon, mayors, governors, and congressmen were requesting that the Shenandoah fly over their regions. In 1925, the airship was ordered on a tour of Midwest state fairs; it was on this trip, on September 3, that the Shenandoah was destroyed in an early morning squall above southeast Ohio. Of the 43 men on board, 14 were killed, including the captain and four other officers.

Engine parts, food from the galley, and personal effects of the crew were strewn about in fields and forests; shortly after the crash, thousands of looters rushed to the site and scavenged anything that could be torn loose or taken. The Department of Justice and the Ohio National Guard arrived to secure the area in late afternoon, but by then the damage was done. Government officials took a dim view of this rampant theft. In the weeks following the disaster, four truckloads of Shenandoah items were confiscated by federal agents in door-to-door searches throughout the region. Despite these efforts, many of the items became treasured family heirlooms, displayed for decades in parlors and living rooms. These are the artifacts that found their way to Rayners homemade museum on wheels, where visitors can see them up close and hold a bit of history in their hands.

We still get donations after all these years, says Rayner, like when someone is clearing out an older relatives home, and they come across a piece of Shenandoahs framework in the attic. Some families had these things hidden away for decades, fearing the government might come for it someday.

Rayners late husband Bryan grew up near Neiswonger Farm, where the bulk of the wreckage fell. As a boy, Bryan collected anything he could find relating to the wreck of the Shenandoah. His family has a connection to the event: The Rayners, along with other local residents, sold soda pop and water to the thousands who traveled to view the site.

News clippings, photographs, and pieces of the ship continued to accumulate in Rayners Garage in Ava, Ohio, the familys towing business. Bryan had quite a collection when we got married, says Rayner. And the couple showed the collection to anyone who asked to see it.

The idea of a more permanent museum came up after the Rayners were asked to set up a Shenandoah history display in a local store window. A portable museum was proposed, and someone traded the Rayners a used travel-trailer that fit the need. A neighbor built custom glass display cases, and other donated materials soon arrived. The USS Shenandoah Museum was ready for the road in 1995. The museum-on-wheels made the couples collection accessible to a whole new audience. We started visiting schools, scout meetings, church socials, and we gave tours of the museum to people just passing through, says Rayner. The increased exposure resulted in more donations and acquisitions. The Rayners bought a larger trailer when the collection outgrew the original.

Treasures displayed inside the museum include various pieces of the ships duralumin framework, sections of the silver outer cover, fragments of the airtight gas cells, plus assorted ropes and rigging. Items from the ships galley include cups and plates used by the crew, plus a sugar bowl with the sugar still inside. Theres an impressive scale-model of the ship, and original sheet music of the mournful song The Wreck of the Shenandoah by Maggie Andrews.

During the Depression, some people repurposed their Shenandoah relics into household items. We have a lampshade made from Shenandoah canvas, says Rayner. When this particular woman needed to replace a tattered lampshade, she stitched up a new one made from fabric she recovered from the wreckage. Theres also an aluminum wash basin from the ship that had been converted into a hanging planter, eventually discarded by the owner. We found that one behind a house in some weeds, recalls Rayner.

Occasionally, the Rayners would buy pieces at local auctions and rummage sales. Bryan was late for his own surprise 50th birthday party because hed heard that a six-foot-long section of Shenandoah framework was to be sold at an estate auction that day in a nearby town. He won the bid, and that relic is on display in the museum today. (Bryan died in 2013.) Rayner gets frustrated when she hears about items that have been discarded by families unaware of the value. To the untrained eye, what appears to be a worthless fragment of metal or canvas may be a piece of American aviation history.

Rayner gets the most satisfaction out of hearing the personal stories associated with the treasures. She tells visitors how the Shenandoahs captain, Lieutenant Commander Zachary Lansdowne, refused to leave his post during the storm. As the ship began to break up, he realized the control gondola was likely to rip loose from the hull. Lansdowne told the men around him to save themselves, and two men quickly climbed the ladder into the hull to safety. The gondola wrenched loose from the ship and fell to earth, killing Lansdowne and six other men who remained at their posts.

A farmhouse near where the gondola fell is empty today, but still standing. The farmer living there on the morning of the accident set up an aid-station in his kitchen for the airships survivors; his back porch served as a makeshift morgue until the coroners arrived.

Since Bryans death, Rayner shows the museum by appointment only. She guides visitors to the various wreckage sites, pointing out the hand-carved block of sandstone off Shenandoah Road that marks the exact spot where townspeople recovered Lansdownes body. The captains U.S. Naval Academy class ring was allegedly found there 12 years after the accident, grown into the stem of a mustard plant. In 1937, the federal government dedicated an impressive granite and bronze memorial in nearby Ava. The once-isolated Neiswonger Farm is now traversed by Interstate 77. Keen-eyed motorists may catch a glimpse of an American flag flying next to a donated sign in a meadow on the west side of the highway near mile-marker 32, a simple reminder of the history that took place there.

In 1991, the Rayners met Peggy Lansdowne Hunt, the daughter of the Shenandoahs captain, who was visiting Noble County to dedicate a memorial. During Hunts visit, the Rayners were able to share their collection with her. That was a turning point for me, says Rayner, meeting someone who was directly affected by this tragedy. Its one thing to know names, dates, and places. Peggy Lansdowne was just three years old when her father died. That changed her life forever. Thats something you have to factor into history.

Rayner still hopes for mementos from an event that occurred almost 100 years ago. There may be prizes still packed in an attic, awaiting discovery.

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A Detroit Lions VP tries to avoid wasting her daughter from uncommon illness – The Shepherd of the Hills Gazette

Posted: at 3:55 pm

Detroit Lions Senior VP of business development Kelly Kozole works with her daughter, Morgan, who has a rare neurological disorder called beta-propeller protein-associated neurodegeneration, or BPAN.Michael Rothstein

TROY, Mich. Wearing a white T-shirt with a massive star in sparkling shades of pink, yellow and seafoam green on the front, Morgan Kozole sits in front of a fold-up chalkboard in the living room of her familys Detroit-area home and starts to draw.

Using pink and yellow chalk, she sketches Mickey and Minnie Mouse. The Disney characters are dominant fixtures in the 5-year-olds life and therefore become a soundtrack for the Kozole family: Morgan constantly saying Mickey, with her long, blond ponytail bouncing to whatever song happens to be playing on the Mickey Mouse Club.

These are the two Mickeys, Morgan says, pointing to the chalkboard. Her mother, Detroit Lions senior vice president of business development Kelly Kozole, explains that this is her way of communicating that she would like a visitor to draw Mickey too. If its close, Morgan accepts it. Another Mickey to fawn over.

For Morgans birthday earlier this year, the family went to Disney World. On this trip, the Kozoles saw what they had longed for: the potential of progress.

She knew where we were. She knew Mickey Mouse, Kelly said. Before, she wouldnt go to the characters, and now shes jumping up and down, hugging. She really, along those lines, is also really into birthdays.

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The Happy Birthday song. Before that, she was just kind of looking. Sometimes it was too much for her with everyone singing sometimes loud noises are too much. This year, we had to sing Happy Birthday to her three times.

Birthdays, for children, are happy occasions reasons for grand celebrations of progress toward adulthood. For the rest of Morgans family it is more complicated.

Morgan has a rare neurological disease called beta-propeller protein-associated neurodegeneration, known as BPAN. Its a disorder, more prevalent in girls than boys, that causes delayed development and seizures, communication issues and, sometimes, motor dysfunction. Its unclear exactly how many people are living with BPAN worldwide due to its rarity, although Dr. Sami Barmada, a scientist at the University of Michigan studying BPAN, said a rough estimate is about 500 to 600 people.

Its rare enough that Dr. Henry Paulson, the director of the Michigan Alzheimers Disease Center, said there are experts in neurodegeneration who are unfamiliar with BPAN. While Kelly is trying to advocate for her daughter and others with BPAN through fundraising for research, science only moves so fast.

The Kozoles understand that. So birthdays for the family arent always happy. They are a reminder of what could come.

That ticking time clock, Kelly said. Every birthday isnt exciting for me for her. Because its one year closer to when this bomb is going to go off.

BPANs rarity makes the reality heartbreakingly simple: There are very few effective treatments, little research and no cure. As Morgan learns how to organize her Peppa Pig characters and learns new words on her iPad her future looms.

At some unpredictable point in Morgans teen and adult years the average is around age 25, according to Barmada development will just stop. Progress will decline and, in some cases, disappear. Those afflicted with BPAN begin suffering from progressive dystonia parkinsonism making it difficult to walk, talk or stand.

Any day, Kelly said, it could be like, Oh, your daughters gone.'

WHEN MORGAN WAS born on Jan. 12, 2015, she was, largely, a healthy baby. She was a little jaundiced but nothing worrisome.

When she would go to the doctors office for shots, Morgan didnt cry. It was a little abnormal, but when youre a parent of a young child no crying is viewed as a minor miracle. Kelly and her husband, Kevin, took this as a sign of a tough kid. Nurses even said how great it was.

Looking back, it was a warning sign something was wrong. BPAN causes a high pain tolerance. Before long, more concerns popped up. Morgan wasnt crawling at nine months, wasnt walking at a year. Expected milestones passed without Morgan reaching them. Kevin and Kelly put her in therapy in late 2016 to work up to these childhood progressive traits and began researching potential causes. They wouldnt find an answer for more than two years.

Morgan Kozole suffers from BPAN, a rare neurological disorder, but still loves the same things any 5-year-old would, including the iPad and her favorite character, Peppa Pig.Michael Rothstein

She was diagnosed with cerebral palsy at first. One doctor diagnosed her with that, and then another, our neurologist said she doesnt have that, Kelly said. Then there was speculation but not a full diagnosis she had autism, so we did all the tests for that.

So through this kind of journey of trying to find out what was wrong, it was exciting that she didnt have something that you were going to this test for but you still had so many more questions as you were eliminating all these potential diseases that she could have.

Befuddled, they began genetic testing, and in November 2018 received a letter about a mutation on Morgans WDR45 gene. Kelly Googled it, stumbled upon BPAN and freaked out, calling their neurologist. The neurologist told Kelly not to worry BPAN was very rare, and Morgan didnt have it.

Doctors diagnosed her with epilepsy because of seizures. Morgan took Keppra, which helped accelerate her vocabulary to about 50 words, typical for a 1-year-old, when she was 3. Then doctors said, no, it wasnt epilepsy, either.

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Another meeting with another neurologist led to a different diagnosis. Three days after she and Kevin returned to Michigan from Super Bowl LIII in February 2019, they received a call. Doctors figured out what was wrong.

It was BPAN.

In my mind, its worse than cancer, Kelly said. How is this even possible? That this can even be so painful for kids later on in life. You try so hard to gain all these abilities, and then early adolescence or early adulthood, its just [gone] one day, and Ive seen a lot of these stories.

Theres a BPAN Facebook website, and thats where the doctors sent us. Theres no cure. Theres no therapy. Go to this website. Thats what I was told.

FOR MONTHS KELLY cried, angry and heartbroken. The Kozoles initially told their families and no one else.

In May 2019, Kelly went to her first Neurodegeneration with Brain Iron Accumulation (NBIA) conference. She met other parents, heard their stories and began the new normal.

She used her skills organization, fundraising and business to brainstorm ways to help. Hardly anyone researched BPAN. Without it, there would be no chance for a cure not in Morgans lifetime, which could reach her 40s, and not in the lifetime of those who might come after.

Kevin Kozole, husband of Lions senior VP Kelly Kozole, plays with his daughter, 5-year-old Morgan, who suffers from a rare neurological disorder called BPAN.Michael Rothstein

She shared what was happening with her boss, Detroit Lions president Rod Wood, and his wife, Susan, using a website link to explain BPAN. Wood knew something was wrong because of texts and emails saying they had to take Morgan to this specialist or that appointment.

As that was confirmed and became her reality, she is now able to talk about it in a way, Wood said. Because shes full bore on trying to help generate awareness and financial resources to find a cure for it.

She went from the unknown to the very tragic known to, OK, what are we going to do about it?'

Kelly consulted her aunts, both of whom worked in medicine. Linda Narhi worked in biotechnology for Amgen for more than 30 years; Dr. Diane Narhi was the first female chief of staff at Simi Valley (California) Hospital. From talking with another group of fundraising BPAN parents BPAN Warriors Kelly found a guide.

Any day, it could be like, Oh, your daughters gone.'

Kelly Kozole, Senior VP of Business Ops, Detroit Lions

If her aunts had not been resources, she might have joined BPAN Warriors. But Kelly admittedly needs to be in control, and this was her daughter. She needed to manage this herself. She created a nonprofit called Dont Forget Morgan.

Kellys aunts provided guidance, and Wood offered contacts he had in the finance industry and Silicon Valley. Wood and Lions general counsel Jay Colvin sit on the board. Other Lions coworkers with Woods blessing built the website, designed the logo and created social media plans and the first pitch video for Dont Forget Morgans rollout in 2020.

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Progress started with a $15,000 grant to help with a mouse model study at Sanford Research in South Dakota with another, larger, potential grant to come. In recent months, Kelly has focused largely on fundraising, and another parent of a child with BPAN, Christina Mascarenhas Ftikas, has focused on the medical side of the nonprofit.

This is why Im here, Kelly said. Im supposed to be a vehicle to get all of this awareness and hopefully a cure for BPAN so the child one, two, three, five years from now, there is hope.

There is no, Go to Facebook. There is something where you can actually give a parent, Heres the symptoms to look for.'

ABOUT AN HOUR away in Ann Arbor, Michigan, Kaci Kegler and her husband, Brian, had been in the same Facebook community. Kelly, new to the group and looking for a nearby connection, wrote Kaci a message.

Hey, my daughter was just diagnosed, could we connect?

Kaci understood. She did the same thing, reaching out without success in 2016 after her daughter, Elle, was diagnosed. Kaci wanted to be a resource.

They talked for an hour. There wasnt much Kaci could say to soothe her. Kelly pinged a year later with another message: Im starting a non-profit. Kaci offered to help.Despite suffering from BPAN, Morgan is like any other 5-year-old who enjoys playing with her brother, Connor.Michael Rothstein

Days later, on Feb. 28, Kaci and her husband, Brian, an assistant athletic director for development at the University of Michigan, had their yearly fundraiser for BPAN research on Rare Disease Day at Pizza House in Ann Arbor. They met a doctor who had a connection to researchers at Michigan.

I literally came home and texted [Kelly] and was like, Oh my gosh, we may have inroads, Kaci said. We just started texting. I have never met Kelly face-to-face. We still havent. But weve texted a lot and weve emailed quite a bit.

It just kind of started.

By summer, they went from nothing to putting pieces in place for a full-fledged research project with a two-year, $140,000 grant for Barmada and Dr. Jason Chua to help start to solve BPAN.

Chua was working on the regulation of autophagy, which is the cleaning out of damaged cells, and studying BPAN became a natural extension of the work he had already been putting in. BPAN alters that in neurons. Barmada said Chuas research provided a rare win-win situation to potentially help with BPAN and other diseases, too.

There are a set of questions in BPAN that nobody has the answer to, Barmada said. And Jason and myself, we just seem to be in the right position, the right place to be able to help out.

The goal is to understand what is happening within BPAN itself and how people end up with it while also trying to find therapies for existing patients. Within a year, they are hoping to grow stem cells from people with BPAN in their lab, allowing for the creation of their own stem cells missing the WDR45 gene. Then, they will try to either replace the gene or stimulate autophagy through genetic or pharmacologic means, Barmada said. The hope is this can prevent neurodegeneration.

So far, theyve hired a research assistant to work with Chua, developed tools to manipulate the gene using the genome-editing tool CRISPR and applied for approval from Michigan and the institutional review board to get skin biopsies to obtain stem cells from BPAN patients.

Its a process, but its also a start.

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Since partnering with Michigan and Sanford, Dont Forget Morgan also began working with Dr. Kathrin Meyer, a researcher at the Center for Gene Therapy at Nationwide Childrens Hospital at Ohio State.

Solving this disease is going to require more than Jason and Sami, Paulson said. Its going to be a first shot across the bow, but its going to require more than that. Ill say this being in the field for a long time. Scientists who are coming up the pike say they want to look at Alzheimers, want to look at epilepsy. They dont say, I want to look at a rare disease.

The only way to solve a rare disease is to get someone hooked. Sometimes when you hook a really good one, as I think we have with Jason here, you hook them for life and they make a difference.

MORGAN IS BOUNCING around the Kozoles suburban Detroit home on this late August day. They just returned from northern Michigan, and having two kids, especially one with special needs, makes tidiness unrealistic.

COVID-19 changed things. Morgan hadnt been to many of her therapies for months. Online school barely kept her attention. There was concern she would have regression in her learning. Instead, her speech advanced by being around Kelly, Kevin and her older brother, Connor, all day. She has sung more songs recently to help increase her vocabulary. Sometimes, shell listen 20 times in a row.

Even more than that, Connor said. They arent sure how much shes truly learning versus memorization. But it is something.Morgan Kozole has inspired her mother, Detroit Lions VP Kelly Kozole, to marshal researchers and other advocates to develop a cure for BPAN, and perhaps help future generations of children who live with the disorder.Michael Rothstein

The family gathers inside Morgans bedroom complete with a special Haven Bed with a zipper to keep her safe from wandering around at night, when she could accidentally turn on the stove and hurt herself or others as sleep disorders are another BPAN issue. She sits on the floor and starts playing with her small, yellow dollhouse and a fake ice cream maker. Kelly asks for an ice cream. Morgan makes one for herself instead and pretends to eat it.

Later, outside, Morgan kicks a soccer ball and plays a modified game of catch with a squishy football. Football, no surprise, is big. She says hike a lot. She knows that term, Kevin says, laughing.

In these moments, Morgan seems like any other young child. She attends St. Hugo of the Hills Parish School in Bloomfield Hills, Michigan, but has a one-on-one para nanny to help. She interacts with people, often overly affectionate.

Sitting at the kitchen table after playtime outside, she plays with Starfall, a childrens learning app, on her iPad. They hope it accelerates her word recognition. Morgan is entranced watching Farmer in the Dell and using her hands to eat orange slices and Cheerios. She needs a mirror in front of her to provide her a target for her mouth. She listens to books, another way to try absorbing information.

Morgan can now count to 20 and say three sentences in a row. Kelly and Kevin have tried to give Morgan a normal life in an abnormal situation, but they worry about the future what she wont have and wont be able to experience.

But Morgan has changed some of that outlook, too.

Focus on how she is so loving and has so much pure joy. A lot of parents of special needs [kids] say you can learn so much from these kids, and you really can, Kelly said. She is, every morning, just so happy, and Mama! Hugs and kisses to strangers. She has none of those behaviors you learn as an adult where youre not kind to people or you dont want to talk to someone.

She is just open arms, will give you a hug and is so loving, and its like, Wow, this is really what life is about.'

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A Detroit Lions VP tries to avoid wasting her daughter from uncommon illness - The Shepherd of the Hills Gazette

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