Taking Taylor’s story to Texas

March 13, 2015
News

By Josh Whitener in The South Charlotte Weekly

Published on March 9, 2015

Laura King Edwards can now add the Lone Star State to the growing list of locations where she’s run to raise awareness of rare diseases – and to honor her 16-year-old sister, Taylor.

Edwards, an avid runner, set a goal last year to run a race in all 50 states to support the search for a cure for rare diseases through raising funds and awareness for rare disease organizations – including Taylor’s Tale, a nonprofit the Edwards’s family founded in her sister’s name.

Taylor was diagnosed with Batten disease in 2006. The rare, fatal childhood disorder is categorized as one of the neuronal ceroid lipofuscinoses, or NCLs, which occur in an estimated 2 to 4 out of every 100,000 live births in the U.S., according to the National Institute of Neurological Disorders and Stroke.

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Woodlands family builds support to battle genetic disease

February 26, 2015
News

By Lindsay Peyton in The Woodlands Community Extra of The Houston Chronicle

Published on February 25, 2015

Will Herndon celebrated his birthday this month. For most families, this would be a joyous occasion, but the Herndons are in a race against time.

The 12-year old resident of The Woodlands is battling Juvenile Batten Disease, a fatal, genetic disorder of the nervous system.

“Birthdays are very difficult,” Will’s mother Missy Herndon said. “The years go by too fast.”

The symptoms of the disease start with vision and memory loss or seizures and progressively worsen over time until affected children become bedridden and blind, suffering from a form of dementia.

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Where There is a Will, There is a Way! Charities Partner at The Woodlands Marathon to Bring Hope to Children on World Rare Disease Day

February 26, 2015
News, Press Releases

THE WOODLANDS, TEXAS – Feb. 28. – Where there is a Will, there is a way! Meet the inspirational Will Herndon and his mother Missy at the Woodlands Marathon Saturday, February 28, 2015. Will’s Warriors will run on World Rare Disease Day to support Will, who is fighting a rare disease.

Six years ago, Will and his family received a devastating diagnosis. Will, a loving, bright, energetic 6-year-old, has juvenile Batten disease—a rare, genetic, neurodegenerative disorder. Batten disease attacks an initially healthy child and causes vision loss, loss of cognitive skills, and seizures. Progressively, children suffer loss of memory and speech until they are mentally and physically incapacitated, eventually leaving them wheelchair bound, and then bedridden. With no current treatment or cure, Batten disease is always fatal, often by the late teens or early twenties. Will, now 12, is blind. His family is heart-broken but driven to find a cure.

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Beyond Batten Disease Foundation of Texas and Brain Canada Launch New Partnership to Expand Network of Researchers Internationally

February 12, 2015
News, Press Releases

Austin, Texas– February 4, 2015 – Beyond Batten Disease Foundation (BBDF) https://beyondbatten.org and Brain Canada http://braincanada.ca are pleased to announce a new partnership that will hire researchers in Canada to investigate, explore and find a cure for juvenile Batten disease.

The research project is for $1.5 million over three years. The goal is to further grow the network of international researchers working to find a cure for juvenile Batten Disease. The deadline to submit a letter of intent is February 9, 2015.

“We are pleased to expand our fight against juvenile Batten disease to experts in Canada to transform juvenile Batten disease research and accelerate our timeline to a cure,” said Danielle M. Kerkovich, PhD, BBDF Principal Scientist.

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Beyond Batten Disease Foundation and the New York Stem Cell Foundation Chosen as a National Innovator by the Milken Institute as They Partner to Find a Cure for Juvenile Batten Disease

November 17, 2014
News, Press Releases

The Battle is Personal for a Texas Father Who is Trying to Save His Own Daughter’s Life

New York City, New York – November 17, 2014 – Beyond Batten Disease Foundation (BBDF) and the New York Stem Cell Foundation (NYSCF) have been selected as a national innovator by the Milken Institute and will present their breakthrough findings about juvenile Batten disease at the 6th annual Partnering for Cures, November 16-18 in New York City.

Craig and Charlotte Benson established Beyond Batten Disease Foundation in August 2008 after their then five-year-old daughter, Christiane, was diagnosed with juvenile Batten disease.  Together with hundreds of families affected by Batten disease, and many more supporters who share their hope and resolve, they are working tirelessly to create a brighter future for Christiane, and all children with Batten disease.

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The Mission to Save Will Herndon

November 3, 2014
News

By Tish Williams in Houston Lifestyles & Homes

Published November 1, 2014

The Community Has Contributed $3 Million to Find a Cure for Juvenile Batten Disease

When Missy Herndon received the call with her son’s test results, the genetic counselor cried over the phone. That’s when it hit her that something was really wrong.

Will was a normal kindergartener. When he held papers closer to his face, Missy and her husband Wayne thought he might need glasses. Then he forgot his alphabet and had to relearn it starting from “A,” but kids do silly things. When a second visit to the eye doctor returned a referral for genetic testing, they began to have some doubts. Still, the Herndons looked to a diagnosis for clarity, the first step to fixing the problem and getting Will back on track.

“I remember the day. The kids were at WoW Science Camp when my phone rang. Picking it up, I was quite confident they had found nothing. I thought, ‘I have this active 5-year-old.’ The genetic counselor started crying on the phone,” Missy says. “I just knew it was horrible.”

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NYSCF Research Institute announces largest-ever stem cell repository

October 22, 2014
News

On Phys.org

Published on October 22, 2014

The New York Stem Cell Foundation (NYSCF) Research Institute, through the launch of its repository in 2015, will provide for the first time the largest-ever number of stem cell lines available to the scientific research community. Initially, over 600 induced pluripotent stem (iPS) cell lines and 1,000 cultured fibroblasts from over 1,000 unique human subjects will be made available, with an increasing number available in the first year. To collect these samples, NYSCF set up a rigorous human subjects system that protects patients and allows for the safe and anonymous collection of samples from people interested in participating in research.

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Hair Crafters holds 18th Annual ‘Cut for a Cause’ event

October 22, 2014
News

On WDNU.com 

Published October 19, 2014

Blue extensions and $20 haircuts drew folks to Hair Crafters Sunday afternoon for the 18th Annual “Cut for a Cause.”

This year the money raised goes towards research for Batten disease, a rare and fatal neurodegenerative disorder that begins in child hood.

NewsCenter 16 has covered the story of Tyler Allman, and “Team Tyler” who have championed awareness for the illness.

Tyler has been fighting batten disease for five years now; he is confined to a wheelchair.

There is no cure for Batten.

However, fundraisers like “Cut for a Cause” help spread awareness to this type of rare disease.

Royer Allman and Heather Allman, “Team Tyler” parents, say, “it was definitely a curveball at first. Tyler was a typical boy that played t-ball was just a normal child, but now he suffers from seizures, he’s blind, he’s lost all of his mobility, so it is a neurodegenerative disease. Today is better than tomorrow, but we just embrace each day and he has such an amazing spirit. And that’s our goal is to keep doing that for him as well as raising money and awareness.”

Hair Crafters raised more than $800 within the first hour of Sunday’s event, and hoped to raise much more throughout the day.

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