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Laura King Edwards ran a half marathon as fifth anniversary nod to his sister’s first run – a 2008 school 5k run that would only be a happy memory if Taylor King hadn’t been diagnosed with Batten disease (CLN1) some two years later early and was already blind.

Fittingly, Edwards – who started running for his sister in 2009 – finished that race blindfolded, with ‘4 Taylor’ stitched onto the fabric covering his eyes.

She would do it again in November 2018, but now as a new mother, recently published author and sister honoring Taylor’s life and all that she brought to her family and the Batten community.

Taylor King, shown here aged around 14, died in 2018 of Batten disease. (Photo by Kristin Vining)

Taylor King, 20, died of her illness on September 26, 2018, just days after Edwards gave birth to a boy at the same hospital.

But before this neurological disorder claimed her ability to talk, walk or interact with friends and family, Taylor learned to read Braille, joined classmates for a ‘dance routine’ talent show and competed in two 5,000km races as a 9 and 10 year old.

“She…wanted to be a normal kid, and she did that as much as she could,” Edwards said in an interview with Batten Disease News from his home in South Carolina.

The girl also took part in an early clinical stem cell trial that included brain surgery shortly before her first school run – a catch for a lifesaver at a time when “it wasn’t happening much for Taylor’s form of Batten disease,” she added.

Her sister accompanied Taylor for a second 5K race the following year, but was a spectator at the first.

“I saw her cross the finish line with her head held high. She was so proud and so brave,” Edwards said.

“Since then, I have been running for her. … Watching her do this gave me the courage to face Batten disease, not as a patient but as an older sister and as an advocate.

Edwards, a columnist at BioNews Services, the parent company of this site, is a co-founder of Taylor’s Tale, a nonprofit supporting Batten research and rare disease advocacy.

Later this month, she will join her mother and Taylor’s Tale co-founder Sharon King at the RARE Patient Advocacy Summit hosted by Global Genes in San Diego. There, the two will talk about how patients, families and advocates can influence and advance work on rare disease treatments.

Their goal is to share “lessons learned and ways to make a difference,” Edwards said. “With a rare disease like Batten, if advocates and families don’t fight back, no one will.”

Joining them on stage will be Steven Gray, an associate professor at the University of Texas Southwestern Medical Center with a research specialty in gene therapy. Taylor’s Tale and other foundations strongly supported Gray’s early work on Batten, also known as CLN disease, while he was at the University of North Carolina. The potential treatment, now known as ABO-202, was acquired by Abeona Therapeutics and received FDA approval for clinical testing in May.

If an idea “shows promise,” Edwards said, bands like Taylor’s Tale need to push it forward until “someone with bigger pockets…can pick it up and take it to the next level.” .

Laura King Edwards during the Charlotte Half Marathon in November 2018. (Photo by Dan Salvo)

Organized as a nonprofit and overseen by volunteers, Taylor’s Tale began in 2007 with the aim of funding studies into a treatment that could save Taylor’s life.

“Initially, research was our only focus,” Edwards said. “We had a single goal of finding a cure for Batten disease.”

Research support continues to be a priority. The group’s largest investment to date has advanced work on a Batten enzyme replacement therapy originally developed by researchers at UT Southwestern, and currently being refined by Collaborations Pharmaceuticals.

But advocating for greater awareness and understanding of the nature of rare diseases like Batten, and how devastating they are to everyone they affect, is now also front and center.

Batten, like any chronic and devastating disease, “affects the whole family,” said Edwards, 37, who carries a mutation like his brother, Stephen King, 32. “It affects relationships within a family, it affects careers, finances; it’s really global.

A genetic test showed that her husband, John, was not a carrier, and their son, Jack, is healthy. She plans to recommend the boy get tested as well when he’s ready.

Edwards provides a passing example in a June column where advocacy — a better public understanding of what is “realistic” with rare diseases — would help, at least in terms of public services.

Taylor was receiving support for equine and pool therapy through an additional federal program early in her illness, only to lose it because she was not improving, as expected.

That expectation “isn’t really realistic for patients like Taylor, children with Batten,” Edwards said. “We weren’t going to see any improvement, because it’s a neurodegenerative disease. What we were trying to do was maintain the functions, and the system just didn’t understand that.

The group’s turn to advocacy was also somewhat inevitable, born out of Taylor’s refusal to simply give in and give up.

Sharon King greeting her daughter at the finish line in 2018. (Photo by Dan Salvo)

It’s also the lesson at the heart of Edward’s 2018 memoir, “Run to the Light,” which she decided to write as she flew to Oregon in 2014, the first leg of a running trip that she hopes will take her to all 50 US states.

Edwards completed his 2013 marathon in less than two hours and recalls taking the blindfold off and feeling “I had a new understanding of what it really means to believe”.

That is to say, belief in a cause is greater than any individual, because causes live and move to affect others.

“At that point, I knew we weren’t going to achieve our goals in time to save Taylor’s life,” Edwards said. “But I realized you can still believe…even if it doesn’t mean what you thought it would mean.

“Even though we weren’t able to save Taylor’s life, we still had a lot to fight for,” and a duty to “be positive and find the good in every day, and do whatever we can to change the world for future Taylors”. ,” she added.

“It’s a lesson that really took a long time to learn, and Taylor is responsible for teaching it to me.”