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Transgender celebrities – The Daily Dot

Posted: June 26, 2017 at 10:48 am

Basically, my soul is like male, JakeZyrus told Oprah Winfrey in 2014, then identifying as a lesbian. But Im not going to go through that stage where I change everything.

Three years later in June 2017, Zyrus changed his name to Jake Zyrus online and officially came out as transgender. The change brought about massive support across the internet for the formerGlee star, as Zyrus joined the ranks of such transgender celebrities asJanet Mock, Ian Harvie, and Laverne Cox.

Of course, Zyrus isnt alone by any means. Trans celebrities are on the rise, and theyre more prominent thanever.

Thats because transgender representation is increasing in media, and there are plenty of trans actors, musicians, comedians, and entertainers out there making their work known. Other times, transgender people find themselves thrust into the spotlight thanks to their extraordinary stories. Take Chelsea Manning, Americas most controversial whistleblower in the nations history. Being a transgender woman most certainly changes the mainstream discussion on her actions and treatment in prison.

Of course, there are too many trans celebrities out there to list. But here are a few out, open, and proud activists you should know about.

Screengrab via Janet Mock/Instagram

Janet Mock is one of the most famous transgender women of color in media today.First enteringthe world of journalism as a staff editor for People magazine, in 2011 she came out as transgender for womens magazineMarie Claire.Mock has sincehosted the MSNBC interview series So POPular!, featuring such popular figures as Lena Dunham and Amber Rose. And shes also served as a producer and interviewerfor the HBO documentary The TransList, exploring the lives and times of popular trans celebrities.

As long as people are targeted because of their identities, our politics and our movement and our actions need to be just as targeted, Mock told Ellein an interview forThe Trans List.We need to be exacting about who is most vulnerable, who is not being served. Its the poor, the incarcerated, the condemned, the feminine, the trans, the queer. Its the uneducated. Thats what we need to center in our politics. And when we center our most vulnerable, we actually are a stronger society.

Alongside her work in entertainment media, Mock came into critical acclaim with her memoir,Redefining Realness:My Path to Womanhood, Identity, Love & So Much More.Released in 2014, Mocks book opens up about her transition as a transgender woman, her life struggles from a young age, and her growth into the person she is today. Redefining Realnessis considered a staple in trans non-fiction literature, showing how transgender writers can talk about their pasts in honest and thoughtful ways.

Screengrab via Jen Richards/Instagram

Jen Richards broke out into the spotlight with her 2016 webseriesHer Story, a romantic dramaexploring transgender womens romantic lives in a hostile and transphobicworld.But Richards has been working for years as a trans activist in entertainment, writing several editorials on trans representation in media, and hosting the Trans 100 project celebrating 100 influential trans figures in the community.

Most notably, Richards reached popular and critical acclaim asphysical therapist Juliette on CMTs series Nashville. In an interview with NewNowNext, Richards praised the shows writers, pointing out how her characters transgender history ishandled through subtle and layered dialogue that isnt too explicit. She believes that, through open and visible representation on TV, trans actors and actresses can change the publics perception of transgender women.

The first trans death of 2017 was a young, black trans woman in Mississippi. One of the ways we can combat things like H.B. 2 in North Carolina is by getting trans people on television, Richards told NewNowNext. That law is only possible by peoples projections of their own fears. They buy into this image of some burly predator who throws on a wig and says theyre a trans woman and can get access to a womens bathroom. Which is fiction for people like me, who have been invisible.

Screengrab via Laura Jane Grace/Instagram

Frontwoman for the band Against Me!, Laura Jane Grace has been making headlines for years as an out and open transgender punk rock musician.After initially comingout to her band and the public in 2012, Graces story sparked public awareness for trans rights in punk rock, with many musicians openly supporting Grace through her transitioning. Since then, Against Me! has released the studio album Transgender Dysphoria Blues, discussing the gender dysphoria and disassociation Grace felt with her body before coming out.

Years later, Grace has continued to work as an LGBTQ activist both inside and outside of the music industry.She also released a memoir in 2016, Tranny,exploring her coming out as largely inspired through her journal entries. In an interview withRolling Stone, Grace sheds light on her transitioning, calling it a process that changes and grows with the person undergoing gender transitioning.

This idea of what youre going to transition into or who youre going to be, thats not how youre going to end up, Grace told Rolling Stone. You dont know who that person youre going to transition into is. You just have to see.

Screengrab via Thomas Beatie/Instagram

American transgender activist Thomas Beatie shows that theres more than one way tobecome a father.Beatie hit national fame after a report for the Advocaterevealed that he had faced discrimination across the country for being a pregnant man. Doctors objected to having him as a patient, citing religious reasons, and Beaties prenatal care quickly became difficult. But as mainstream news outlets began covering Beaties story, his pregnancy gave rise to national and international interest in transgender parenthood, paving the way for a larger discussion on fatherhood and pregnancy for transgender men.

Beaties story has also introduced another important issuefor the trans community: transgender parental rights.

After Beatie and his former wife Nancy began divorce proceedings, Beaties relationship with his wife and his children created a national precedent for transgender child custody cases. Amessy and complicated proceeding with the Arizona court system followed, which repeatedly wavered on Beaties gender identity as well as his relationship with his children. By 2013, the courts refused toallow Beatie to separate from his wife, citingBeaties transgender status to claim that the marriage was actually a same-sex relationship. At the time, Arizona did not allow same-sex marriage, so ironically the judge ruled that Thomas Beatie was in a same-sex marriage and thus could not get a divorce for a marriage that the state did not recognize.

The ruling was riddled with transphobia. But in 2014, the Arizona Appeals Court ruled that the Beaties marriage was legitimate, andThomas Beatie and his ex-wife Nancy were allowed to finalize their divorce.Both Beatie and his ex- have equal custody rights. While trans activists still have a lot of work to do before transgender parenthood is widely respected across the U.S., Beatie opened up a legal precedent that legitimizes trans parenthood bytreating transgender fathers as legitimate parents.

Screengrab via Ian Harvie/Instagram

Transgendercomedian and actor Ian Harvie has starred in Amazons series Transparentas Dale for a while now,but Harvie has been performing stand-up since 2002. Touring with Margaret Cho and appearing in the LGBT talk show The Ian Harvie Show,Harvie has since featuredin shows from Roadtrip Nation to Young & Hungry.

Harvie is different from other standup comedians. Hes open about everything in his stand-up, from using restrooms to getting top surgery, from his sex life to being trans. As an out and open trans man, Harvie has worked as an activist for trans representation in entertainment for years, both in front of the camera and behind the scenes. He thinks that producers should employ more trans people to tell trans stories and that by including trans people in productions, transgender writers, actors, and editors can create better stories to share with the world.

I think that people are understanding that they must include trans people in the storytelling behind the camera, in front of the camera, in the writers room, producer, and all aspects because its passing through so many hands before the consumers actually see it and having us involved in the storytelling is gonna get the story right, Harvie said during an interview withthe Mary Sue. When you get the story right, it can be lifesaving so representation matters.

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Screengrab via Caitlyn Jenner/Instagram

Highly controversial both inside and outside the trans community, Caitlyn Jenner is one of the most prominent transgender celebrities in the United States. Andfor many, her story features the first compassionate coverage ofgender transitioning in the American mainstream media.

Jenner first came out in2015, during an interview with Diane Sawyer on ABCs20/20.She revealed that, from a young age, she had dealt with gender dysphoria and identified as a woman. Back in the 90s, Jenner had experimented with her gender identity and even began hormone replacement therapy, but she stopped after her relationship with Kris Kardashian grew into marriage.

Since coming out, Caitlyn Jenner has constantly been in the public spotlight as a visible trans woman. And for many Americans, Jenner is also their first exposure to gender transitioning and transgender women.Vanity Fair ran a feature story on Jenner at the time, she received an ESPY award for her bravery, and activists (initially)turned to Caitlyn Jenner as a role model for the trans community. Jenner didnt bring trans issues into the mainstream, but her transitioning certainly cemented their presence.

Since then, Jenner has stirred some major disagreement among both LGBTQ Americans and outsiders. Transgender Americans have largely criticized Jenner for her Republican leanings, including hersupport for Ted Cruz and herbizarrely apathetic gay marriage statementon Ellen.More recently, Jenner received bipartisan scorn after joking about the Alexandria GOP shooting that left Rep. Steve Scalise in critical condition. But the LGBTQ community has cometo her support in multiple occasions, including defending Jenner after she was harassed in the United Kingdomover her gender identity.

America may remain mixed on Caitlyn Jenner, but when it comes to trans celebrities, shes out, proud, and isnt going away anytime soon.

Screengrab via Laverne Cox/Instagram

Laverne Cox may just be the most famous transgender actress in TV and film today, thanks in part to her role onOrange Is the New Black. Shes also the first openly transgender person to receive a Primetime Emmy nomination in history.

Cox stars as Sophia Burset inOrange Is the New Black,a transgender woman sent to prison for credit card fraud while attempting to fund her gender transitioning. For many viewers, Burset was the first sympathetic trans character ever seen on TV. Since then, Coxs career has grown, and shes starred in a variety of projects and series, from CBSsDoubt to Foxs remake ofThe Rocky Horror Picture Show.

Although most Americans recognize Cox through her appearance onOrange Is the New Black,Laverne Cox has been cast intoa variety of shows and movies since first appearing on the show, from Paul Weitzs comedy-drama film Grandma tothe upcoming drama film Freak Show.She also ran, produced, and starred in her own show, TRANSform Me, in which three transgender women give a cisgender woman a makeover.

With each new show, Cox has become a more visible openly transgender woman in media. And offset, Cox works on behalf of transgender women of color across the U.S., raising up trans voices and making room for visibility in a world where most trans people of color are looked at with disdain and scorn. By far, she is one of the most important trans women actresses in the world to date, along with one of the most important transgender activists of color.

Cox also agrees that transgender women should primarily play trans rolesbecause trans characters can help cisgender viewers build empathy for transgender women. My experience as a trans woman playing a trans character is that I have found that audiences not only have empathy for the character that I play but they find themselves having empathy for the actor who plays that character, Laverne Cox said. And I think theres a lot of evidence that this moment happening with me and Orange has created an enormous amount of social change. Right? I mean, like just look at the resume! The proof is there.

Screengrab via Chelsea Manning/Instagram

Easily one of the most internationally famoustransgender activists in the United States, Chelsea Manning rose to fame as a whistleblower that shed light onto civilian casualties amassed during the Iraq War. Imprisoned for years, her sentence was later commuted by President Obama, and she was released in May 2017. But during her years in military prison, Manning came out as a transgender woman and began working as an activist for trans rights for both incarcerated trans people as well as trans citizens across theU.S.

An interview with theNew York Times reveals the turbulent years Manning spent in prison, discovering her identity while fighting to stay alive in grueling and isolating conditions. She opened up about some of the struggles she experienced on hormone replacement therapy, including the emerging and conflicting emotions she felt as estrogen began giving her a wider range of feelings.

Id built all these defenses and walls around my emotions over the years, since being a teenager. When my testosterone levels plummeted, I suddenly became more vulnerable emotionally. I could no longer just hide my emotions: I had to deal with them, usually right there and then, Manning told the Times. Good ones, like confidence, and a sense of connection with my friends, mixed in with a lot of bad ones, like doubt, loneliness, uncertainty and loss.

Mannings activism not just gives hope to young trans people, but her story also sheds light onto some of the haunting experiences that transgender women face while incarcerated. And they look at Manning with hope for the future, showing how transgender womencan survive even the most oppressive conditions.

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Existing Drug Found to be Effective at Killing Cancer Stem Cells – Technology Networks

Posted: at 10:48 am

Researchers experiment with the Sam68 protein. Credit: McMaster University

A team of researchers at McMaster University has identified a unique feature of cancer stem cells that can be exploited to kill the deadly cells thought to be the reason that cancer comes back after therapy. Understanding this feature will be useful for delivering more targeted cancer therapeutics to the right patients.

The study, published today in the scientific journal Cell Chemical Biology, reveals that an existing set of drugs is effective in killing cancer stem cells and explains how this led the team to uncovering important details about how these cells are working in human tumors.

“The drugs helped us to understand the biology,” said Mick Bhatia, principal investigator of the study and scientific director of the McMaster Stem Cell and Cancer Research Institute. “We’ve worked backwards, employing a series of drugs used in the clinic to understand a new way that cancer stem cells can be killed.”

The researchers found that a particular protein, called Sam68, is an important actor in cancer stem cells, and that this protein allows existing drugs to work on cancer cells, causing them to die.

Bhatia hopes that this information can be used to deliver targeted therapies to the patients who would benefit from them, while sparing others from unhelpful treatments. He believes that treatment of blood cancers like leukemia and other cancers such as prostate, colon and renal will follow the example set in breast cancer, where patients receive treatments tailored to their specific form of the disease.

“In the case of breast cancer, other researchers have found new ways to make existing drugs more effective by only giving them to people who were likely to benefit based on their specific traits and using drugs that target these traits,” Bhatia said.

He said while developing a new drug takes an average of about 15 years and comes with a price tag in the hundreds of millions, defining the role of existing drugs to use them better in patients will help to accelerate the process of bringing the right drugs to the right people.

Reference

Mickie Bhatia et al. Sam68 Allows Selective Targeting of Human Cancer Stem Cells. Cell Chemical Biology, June 2017 DOI: 10.1016/j.chembiol.2017.05.026

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Large-scale production of living brain cells enables entirely new research – Medical Xpress

Posted: at 10:48 am

June 26, 2017

Important pieces of the puzzle to understand what drives diseases such as Alzheimer’s and Parkinson’s are still missing today. One crucial obstacle for researchers is that it is impossible to examine a living brain cell in someone who is affected by the disease. With the help of a new method for cell conversion, researchers at Lund University in Sweden have found a way to produce diseased, aging brain cells on a large scale in a cell culture dish.

After performing a biopsy on the patient, the skin cells are transformed into brain cells that effectively imitate the disease and the age of the patient. The fact that the cells can now be produced in large quantities enables researchers to carry out a series of experiments that were previously not possible.

A few years ago, Malin Parmar’s research team was one of the first in the world to convert human skin cells directly into brain cells without passing the stem cell state. The discovery shocked the researchers and was perceived as almost impossible. The team is now approaching a point where the discovery is about to bear fruit on a wide scale. By following a new method that involves slightly changing the genetic code that triggers cell conversion, the researchers were able to multiply the production of disease-specific brain cells.

“Primarily, we inhibited a protein, REST, involved in establishing identity in cells that are not nerve cells. After limiting this protein’s impact in the cells during the conversion process, we’ve seen completely different results. Since then, we’ve been playing around with changing the dosage of the other components in the previous method, which also proved effective. Overall, the efficiency is remarkable. We can now generate almost unlimited amounts of neurons from one skin biopsy”, says Malin Parmar, professor of developmental and regenerative neurobiology at Lund University.

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The increase in production will have far-reaching effects. The new volumes enable research projects that were simply not viable before. Among other things, it opens up research areas linked to new drug testing, the establishment of more accurate disease models and the development of diagnostics to detect the diseases at an earlier stage.

The new cells are not only able to imitate the disease but also the patient’s age. By studying the cell in the culture dish, the researchers can now monitor the mechanisms of the disease in an “old” brain cell over time. Neurodegenerative diseases are commonly referred to as “aging brain diseases” and in order to understand them, we must better appreciate how the age specifically affects the course of the disease. The Lund researchers’ discovery can hopefully contribute a crucial piece to the puzzle with regard to the connection between the onset of disease and cell aging, something which previous research based on animal experiments and stem cells has failed to provide.

“This takes us one step closer to reality, as we can now look inside the human neurons and see what goes on inside the cell in these diseases. If all goes well, this could fundamentally change the field of research, as it helps us better understand the real mechanisms of the disease. We believe that many laboratories around the world would like to start testing on these cells to get closer to the diseases”, says Johan Jakobsson, leader of the molecular neurogenetics research group at Lund University.

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Potential leukemia drug better aimed at muscular dystrophy, NIH says – Patient Daily

Posted: June 25, 2017 at 9:44 pm

A drug formerly meant for cancer treatment may be better used to treat muscular dystrophy, according to researchers from the National Institutes of Health (NIH) and the University of Nevada, Reno School of Medicine.

Known as SU9516, the drug was meant to be used to battle leukemia until researchers discovered that it ramped up production of a protein missing from patients with muscular dystrophy, a disease that causes muscles to deteriorate.

Although the drugs positive results have only been confirmed in animal testing, scientists are hoping the discovery will provide the missing link for better muscular dystrophy treatment.

The studys chief author, pharmacology professor Dean Burkin of the University of Nevada, said he thinks SU9516 and other medicines could also treat illnesses other than muscular dystrophy.

Integrin stabilizes muscle structure, and helps stimulate muscle repair and regeneration, Burkin said in the release. If we can artificially increase its production with drugs, we think it can help protect muscle cells from damage.

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Santhera’s Raxone Receives First Positive EAMS Scientific … – GlobeNewswire (press release)

Posted: at 9:44 pm

June 22, 2017 01:23 ET | Source: Santhera Pharmaceuticals Holding Ltd

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Liestal, Switzerland, June22, 2017 – Santhera Pharmaceuticals (SIX:SANN) announces that the UK’s Medicines and Healthcare products Regulatory Agency (MHRA) has granted Raxone (idebenone) a positive scientific opinion through the Early Access to Medicines Scheme (EAMS) for patients with respiratory function decline not taking glucocorticoids in Duchenne Muscular Dystrophy (DMD).

The aim of the EAMS is to provide patients with life threatening or seriously debilitating conditions access to medicines that do not yet have a marketing authorization when there is a clear unmet medical need.1 The MHRA decision allows patients with DMD, who meet criteria defined under this scheme, to gain access to Raxone, an investigational medicinal product currently under review for DMD for Marketing Authorization by the European Medicines Agency (EMA).

Under the EAMS, and as shown in the public assessment report,2 Raxone is indicated for slowing the decline of respiratory function in patients with DMD from the age of 10 years who are currently not taking glucocorticoids. The decline of respiratory function must be confirmed by repeated measurements prior to initiation of treatment. Raxone can be used in patients previously treated with glucocorticoids or in patients in whom glucocorticoid treatment is not tolerated or is considered inadvisable.

“We’re proud to receive the positive EAMS scientific opinion for Raxone in the UK and to have our lead compound designated as a promising innovative medicine, the first for a drug intended for the treatment of DMD,” said Thomas Meier, PhD, CEO of Santhera. “This decision allows patients with DMD to receive treatment for respiratory function decline who otherwise would not have access to such treatment options.”

“This is excellent news for patients with respiratory decline in Duchenne muscular dystrophy,” said Janet Bloor, Chair of the Board of Trustees at Action Duchenne. “The need for new treatments in DMD is very great and the EAMS can help to accelerate access for patients. Action Duchenne was pleased to provide advice during the development of the EAMS program and we are delighted to see this first positive opinion in DMD.”

About the UK Early Access to Medicines Scheme (EAMS) The UK’s industry-sponsored EAMS aims to give patients with life threatening or seriously debilitating conditions access to medicines that do not yet have a marketing authorization when there is a clear unmet medical need. Under the scheme, the MHRA provides a scientific opinion on the benefit/risk balance of the medicine, based on the data available when the EAMS submission was made. The opinion lasts for a year and can be renewed. The scheme is voluntary and the opinion from MHRA does not replace the normal licensing procedures for medicines.

About Santhera Santhera Pharmaceuticals (SIX: SANN) is a Swiss specialty pharmaceutical company focused on the development and commercialization of innovative pharmaceutical products for the treatment of orphan mitochondrial and neuromuscular diseases. Santhera’s lead product Raxone (idebenone) is authorized in the European Union, Norway, Iceland and Liechtenstein for the treatment of Leber’s hereditary optic neuropathy (LHON). For Duchenne muscular dystrophy (DMD), Santhera has filed a Marketing Authorization Application in the European Union and Switzerland for DMD patients with respiratory function decline who are not taking glucocorticoids. In collaboration with the U.S. National Institute of Neurological Disorders and Stroke (NINDS) Santhera is developing Raxone in a third indication, primary progressive multiple sclerosis (PPMS), and omigapil for congenital muscular dystrophy (CMD), all areas of high unmet medical need. For further information, please visit the Company’s website http://www.santhera.com.

Raxone is a trademark of Santhera Pharmaceuticals.

For further information, contact: Thomas Meier, PhD, Chief Executive Officer Christoph Rentsch, Chief Financial Officer Phone +41 61 906 89 64 Phone +41 61 906 89 65 [email protected] [email protected]

Sue Schneidhorst, Head Group Communications Phone +41 61 906 89 26 [email protected]

US investor contact US Public Relations contact Hans Vitzthum, LifeSci Advisors, LLC Chris Welsh, Consilium Strategic Communications Phone +1 212 915 2568 Phone +1 646 586 2113 [email protected] [email protected]

European Public Relations contact Amber Fennell, Consilium Strategic Communications Phone +44 20 3709 5700 [email protected]

Disclaimer / Forward-looking statements This communication does not constitute an offer or invitation to subscribe for or purchase any securities of Santhera Pharmaceuticals Holding AG. This publication may contain certain forward-looking statements concerning the Company and its business. Such statements involve certain risks, uncertainties and other factors which could cause the actual results, financial condition, performance or achievements of the Company to be materially different from those expressed or implied by such statements. Readers should therefore not place undue reliance on these statements, particularly not in connection with any contract or investment decision. The Company disclaims any obligation to update these forward-looking statements.

References 1 Medicines and Healthcare products Regulatory Agency Patient safety and Marketing authorisations, variations and licensing guidance. Available at: https://www.gov.uk/guidance/apply-for-the-early-access-to-medicines-scheme-eams (June 2017) 2 Public assessment report. Available at https://www.gov.uk/government/publications/early-access-to-medicines-scheme-eams-scientific-opinion-raxone-to-treat-the-decline-of-respiratory-function-in-patients-with-duchenne-muscular-dys

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BC team breaks unofficial world record for half marathon pushing a wheelchair – CTV News

Posted: at 9:44 pm

Two B.C. menone in a wheelchair and one pushing the wheelchairfinished the Scotiabank Half Marathon Sunday well under the world record time for the second year in a row, but their race won’t be recognized because they built their chair instead of buying it.

Rand Surbey, 42, has Cerebral Palsy. He can’t speak, but he has a clear sense of adventure and smiles the whole way while his friend Jason Cole, 46, pushes his custom-built racing chair along the 21 kilometre half marathon course.

They say the chair is what’s preventing the pair from holding the official Guinness World Record for the fastest half marathon pushing a wheelchair. The current record is held by Andrew Steward of the U.K. who pushed his son Chris around the course in one hour and 54 minutes.

“We were disqualified because this duct-tape encrusted piece of rust is considered an advantage for Rand here over $10,000 carbon fibre racing carriage,” Cole told CTV News.

Cole thinks it’s unfair because neither he nor Surbey has “deep pockets” to afford a commercially sold racing chair. Plus, Cole says, he’d have to modify a store bought chair anyway to suit Surbey. The 42-year-old weighs about 150 pounds, so Cole had to reinforce the front wheel of his chair.

“They don’t realize that every wheelchair has to be adapted to a person’s needs,” he said. “If they really want to make it fair they need to make criteria that anyone can follow regardless of your purse strings.”

Still, Cole is thrilled that the chair they built can not only race other wheelchairs, but contend with able-bodied people racing too.

Surbey and Cole beat the current world record by 20 minutes in 2016, when they finished the Scotiabank Half Marathon in one hour and 34 minutes. This year they managed a similar time, but Cole waited at the finish line to cross just under the record.

“We figured we’d give the other nine billion people on the planet a chance to catch us,” Cole joked.

He didn’t want to dwell on the record though, instead choosing to focus on the funds he and Surbey are raising in support of #TeamCPABC for the Cerebral Palsy Association of BC.

They’ve already raised $15,000 but their goal is $25,000.

“They’re a huge inspiration for our entire team,” said Ian Bushfield, events coordinator with CPABC. “People love seeing how hard they push through a half marathon.”

Surbey and Cole trained together for six days a week preparing for the half marathon. Once they found out it would be hot on race day, they trained in track suits and sweaters to get used to the warmth.

The pair met when Cole was volunteering guiding accessible hikes. He could tell right away that Surbey “had quite a thirst for adventure.”

Since then, they’ve done races together including a Tough Mudder and two half marathons. For Cole, seeing Surbey’s smile makes all the physical pain of running the half marathon worth it.

“He’s the smiles and the thumbs up,” Cole said of Surbey. “He’s the personality of the group.”

Guinness World Records did not respond to a request for comment before publication.

With a report from CTV Vancouver’s Michele Brunoro.

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Gaylord Hospital in Wallingford has special unit to treat adolescents with spinal cord injuries – New Haven Register

Posted: at 9:43 pm

WALLINGFORD >> Even in a hospital floor full of nurses, a mother of a teenager recovering from a spinal cord or brain injury never wants to be far away.

I can hear mom in my sleep, said Shirleyann Pompea, whose daughter fractured her neck and injured her spinal cord in April. I can get there before the call bell.

Pompeas daughter, Janelle, lived at Gaylord Specialty Healthcare for close to two months while she recovered from the injuries she suffered in a car accident in Redding. And every night of her stay in Wallingford, Pompea or her husband, have been right next door.

For the 49 days shes been here, weve been here, Pompea said on a recent day her daughter was set to finally go home.

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The Adolescent Spinal Cord Injury Unit at the Gaylord Hospital was recently recognized by the Greater New Haven Chamber of Commerces Health Care Council for its innovative approach to caring for teenagers and their families. Gaylord Specialty Healthcare/Gaylord Hospital serves approximately 1,400 inpatients and 6,000 outpatients every year. The hospital specializes in care for complex injuries where patients require intensive rehabilitation.

The Adolescent Spinal Cord Injury Unit opened last spring and is complete with two family suites that allow parents or other family to sleep right next door to the patient. Kimberly Thompson, a spokeswoman for the hospital, said someone is always waiting to fill a suite as soon as it empties.

The two rooms of the suite are connected by bathrooms, so theres no need to go into a hospital hallway in the middle of the night if the patient needs something, Thompson said.

Youve already had something traumatic happen to your family, Thompson said. The family suites were created to help limit further trauma by letting parents be nearby, she said.

In addition, each patient in the unit has access to Wi-Fi and a Netflix subscription. Theres a game room called The Loft complete with video games, board games, and extra chairs for visiting friends.

Pompea said she and her husband, and sometimes their older sons, took turns staying overnight in the suite so their 16-year-old daughter would never be alone there overnight. Having easy access to their daughter and a place to stay was invaluable for them as a family, especially given her length of stay at the hospital, Pompea said.

Prior to moving into Gaylord Hospital, their daughter spent the 11 days immediately after her car accident in an Intensive Care Unit in New Haven followed by nine days in a burn unit in Bridgeport. Prior to coming to Wallingford, family members had to stay in nearby hotels and couldnt be with her all the time.

The most important thing was keeping her in good spirits, Pompea said. Having that adolescent room, you cant go wrong.

Being able to stay right next door helped Pompea be able to help her daughter get ready for bed each night, and dressed and ready each morning. The comfort of the suite allowed her to stay up and watch television with her daughter until she was ready to go to sleep, paint her nails to keep her spirits up, or even hold pizza parties for her friends

Were definitely catering to (the teenager) population now more than ever, said Heather Hancort, a nurse manager on the adolescent brain and spinal cord unit at Gaylord Hospital. Now, were able to properly care for the patients and their families.

An aspiring interior decorator or event planner, Janelle Pompea said she also spent time to decorate her room and make it feel like her own.

I didnt feel like I was in a hospital, she said. I was not claustrophobic or like I wanted to get out or anything.

But, she also made sure she wasnt spending too much time there. She liked to keep her days full at the hospital, scheduling therapy sessions or time in the gym as often as she could so her days were packed and she avoided just sitting in her room.

Ive wanted to be busy, she said. I was trying to get as much in as possible.

Though Pompea left the hospital, she said she would be back to continue outpatient therapy. Pompea has limited arm mobility, her left arm must stay in a sling, and she still wears a neck brace. Of the seven teenagers that were piled into the car that crashed in April, all without seatbelts on, Pompea is the last to be leaving a hospital.

Since being at Gaylord Hospital, Pompea said she was grateful to have her mom right next door in case she needed anything, especially in the middle of the night.

I prefer my mom helping me, because shes my mom, she said. She kept my company.

Pompeas mom would even scroll through her iPad for her in the evenings when she wanted to use it. At least she did until Pompea learned to use her feet to do it on her own.

As for advice for other teenagers who might find themselves in the brain injury and spinal cord unit of a hospital, Pompea said its always best to think positively.

On the bright side, youre alive, she said. I probably wouldve died if no one was there to get us out of the car.

While she finally got to go home from Gaylord Hospital, 69 days after the accident, Pompea has another countdown going.

On July 12, shell finally get to remove her neck brace, another milestone to look forward to in her long road to recovery.

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Gaylord Hospital in Wallingford has special unit to treat adolescents with spinal cord injuries – New Haven Register

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Scots researchers lead drive for new generation of Multiple Sclerosis drug – Herald Scotland

Posted: at 9:43 pm

RESEARCHERS in Scotland are leading the drive to develop a new generation of multiple sclerosis drugs designed to reverse symptoms in patients with more advanced disability.

The only MS drugs currently available treat the earlier, inflammatory stages of the disease and cannot repair the nerve damage which causes problems with speech and mobility.

However, scientists in Edinburgh and Glasgow are now leading projects funded by MS Society Scotland which they hope will eventually produce treatments which can repair myelin – the protective sheath around nerve cells which is destroyed in MS.

Dr Anna Williams, a neurologist at Edinburgh University’s Centre for Regenerative Medicine, said: “Myelin is like the insulation on wires – it’s there to make your nerves conduct electricity better. If it comes off, your nerves don’t conduct electricity well so you might want to move your leg but find it more difficult to do so because the electrical impulse isn’t being transmitted properly from the brain to the muscle. In the longer term if the myelin isn’t there then the nerve itself dies and people get stuck with disability.

“What we want to do is persuade the brain to put the myelin back on these nerves and stop them from dying.”

The three-year project is focused on a protein called fractalkine which appears to guide repairs in the brain by first attracting macrophage cells to damaged areas to “hoover up the mess” and then instructs oligodendrocytes – the cells which carry out myelin repair – to get to work.

The scientists will analyse samples of brain tissue donated by deceased MS patients to test their theory.

“If one lesion has a lot of fractalkine then we would expect to find a lot of ‘repair cells’ as well, and ones that ones with less fractalkine would have fewer,” said Dr Williams. “If so, that will give us an indication of whether fractalkine is important in humans.”

The scientists will then attempt to use fractalkine to repair myelin in mice brains designed to simulate MS. Although fractalkine occurs naturally in humans and there is evidence that some myelin repair already takes place, it always stalls before the repair is complete. The scientists hope that by gaining a better understanding of the protein, they will eventually pave the way to a drug which can either mimic the effect of fractalkine or encourage it to work more effectively – thereby promoting myelin repair and preventing nerve cell death, a major breakthrough for MS patients.

Meanwhile, researchers in Glasgow, Liverpool and Munich are looking at how a chemical better known for its blood thinning properties could also offer clues to myelin repair.

The study is using heparin – a type of sugar normally associated with breaking down clots – but which has been modified instead to block a type of scarring response associated with MS and other nervous system damage, including spinal cord injuries. The team found that when these modified heparins were added to cell cultures in the lab designed to mimic MS, they encouraged myelin repair.

The next phase will test the response directly in mice which have been fed cuprizone, a toxin which will trigger the destruction of myelin in the rodents’ brains. Once this has been achieved, the modified heparin will be administered to the mice either by an IV drip or directly by injections into the affected regions of the brain.

Afterwards the tissue will be dissected to assess whether the myelin has been restored.

Sue Barnett, professor of cellular neuroscience at Glasgow University, said: “If we can keep nerves in MS patients myelinated for longer then it might have some consequence on the progression of the disease. It could alleviate symptoms.”

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Young man’s wish of sharing the healing power of music comes true – KATU

Posted: at 9:43 pm

Photo courtesy Make-A-Wish Oregon

PORTLAND, Ore. A recent Ridgefield High School graduates wish of sharing his love of music came true on Sunday thanks to he Make-a-Wish Foundation of Oregon.

Nathan Ehline played his music in front of a packed house at Portlands Crystal Ballroom.

Ehline, who suffers from Cerebral Palsy, had a bad reaction to a drug treatment and was in the hospital with a life-threatening condition.

Nathan plays piano and cajn, and says music was a huge part of the healing process. He says music gives him an out-of-body experience while he’s going through treatment.

He hopes this once-in-a-lifetime experience can inspire others while they’re going through treatment.

Just the joy you get out of it. When you’re done with the show or start with it, it sends chills down your spine,” said Ehline.

Nathan said his love of music started three years ago when he and a friend played at First Thursday in the Pearl District. He says he regularly uploads his music online.

This is a developing story; updates will be posted.

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Young man’s wish of sharing the healing power of music comes true – KATU

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These students just received a scholarship from Beyonc – PBS NewsHour

Posted: at 9:42 pm

Sadiya Ramos, a recipient of the Formation Scholarship, has been dancing since she was 3 years old. Photo courtesy of Sadiya Ramos

Maya Rogers had been playing music for nearly 30 years in 2013 when she sustained a traumatic brain injury from a car crash.

When she began treatment, which involved playing instruments and singing to accelerate her recovery, Rogers was no longer able to read sheet music. It took years of work, but she was able to eventually sing and play again, and also teach.

Today, she is one of four recipients of the Formation Scholarship, a tuition award created by singer and songwriter Beyonc and funded by her company Parkwood Entertainment that supports young black female scholars.

Endowed in honor of Beyoncs visual album Lemonade, which was released one year ago, the tuition scholarship provides $25,000 for four students. Applicants composed an essay describing why Lemonade was significant to their lives and submitted a portfolio of their work.

Recipients say the Formation Scholarship, named after the last track of the album, is doing more than just funding tuition: it is helping young black women to enter creative fields, where under-representation, job insecurity and discrimination can act as barriers to entry or deterrents to continuing a career.

If a young black girl saw me performing, talking about something that was universal, I think it would definitely have an impact on her because she saw someone that was like her doing it, too, Rogers said.

The NewsHour Weekend spoke to the four scholars to learn more about their backgrounds, embracing their identities as black women and the goals of their work.

Bria Paige, 19, Spelman College

Photo courtesy of The Formation Scholars Award

The granddaughter of a professor and daughter of a lawyer, Bria Paige knew that she wanted to study English before enrolling at Spelman, where she has focused her studies on authors from marginalized communities.

As a UNCF Mellon Mays Undergraduate Fellow, Paige will be conducting research on black women and their political spaces, a project in part inspired by Lemonade.

I felt like her album transcended just the artistry and really delved into the political, Paige said of Beyonc. Her album really celebrated black womanhood. And not only the joy and triumphs of black womanhood, but also the perils, the hard times.

Paige intends to earn her PhD in English and become a professor. She hopes to use an interdisciplinary framework in academia, incorporating womens studies and gender studies. Being a Formation scholar just means to me being bold, unafraid and unapologetic in my work and in my scholarship, she said. Lets just get in formation to really shake up this world and make our presence known.

Sadiya Ramos, 19, Berklee College of Music

Sadiya Ramos dance career started at age 3 when she began taking lyrical dance lessons from her mother at their church. Since then, she has appeared in the Nutcracker with the American Ballet Theatre, performed with Stevie Wonder at the Special Olympics and danced in a music video to protest the death of Philando Castile, who was shot and killed by a police officer last year during a traffic stop in Minnesota.

I fell in love with the ability to communicate through your body. The body has no limits and neither does creativity, Ramos said.

As a child, Ramos felt she was rejected from some roles for which she was qualified because she is not white. My greatest challenge is being a woman of color in ballet, she said. There are more as the years go by, but there arent many of us and people arent exactly open to this change. That was definitely something that I went through as a child because the way my body grew was different, my skin tone was different and I was just different. That was hard for me to understand as a youth.

With the aid of supportive dance teachers, and with ballerinas of color like Laura Anderson, Michaela DePrince and Misty Copeland as role models, Ramos said she gained the confidence to embrace what makes her different.

As a woman of color, people have different perceptions of me and how I will act and how I will dance. My parents instilled in me the importance of not paying attention to the outside noise because it truly didnt matter. It was just about dance, she said.

Maya Rogers, 36, Howard University

Music has been a part of Rogers life since she began playing the violin at age 4 and started practicing piano a year later. She took singing lessons from her mother and played the flute throughout college.

Rogers was repeatedly told that her interest in the creative arts could not yield a stable career, but she did not want to leave it behind. Her experience teaching led her to study music therapy and the healing arts. She said the scholarship has helped to ease the burden of schools expenses, bringing her closer to becoming the first person to earn a certificate in music therapy from Howard University.

My focus is really these days around how music impacts human beings, how the human voice is something that we can use to be empowered by how it connects us to one another when we sing together. Really wonderful things happen: we bond together socially, our bodies actually begin to sync up, our heart beats sync up, we breathe together, Rogers said.

She added that she hopes to work with people who have disabilities and can benefit from music therapy. Witnessing how music really impacts their ability to communicate better, their self confidence, their general enjoyment for life. To me, those are the greatest triumphs, she said.

Avery Youngblood, 23, Parsons School of Design

Photo courtesy of Avery Youngblood

Avery Youngblood said her own identity as a black woman has shaped her scholarship, having written an undergraduate thesis on minority dialect and African American Vernacular English at Stanford University. Now, it continues to do so as she studies at the Parsons School of Design.

Youngblood said she enjoys using design to relay political messages on race, ethnicity and linguistics, among other topics. She is always thinking about perception: how she is perceived because of her race and gender, how other people are perceived because of their identities and how such perception affects opportunities available to them.

Your greatest strength is your identity, your roots, she said.

Youngblood believes black womanhood gives her a unique perspective to design and encourages her to create for a diverse audience.

I think as you become older, you become more conscious of whats around you: how everything is geared towards a certain audience or geared towards a certain demographic and you realize youre not that demographic, she said. What design has allowed me to do is actually look at every single thing that I walk past especially in New York, where you have so many advertisements and you can tell what speaks to you and what doesnt speak to you. I hope to achieve designs that speak to all different types of bodies.

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