2018 Run to the Sun Success!

This past Sunday Austin Youth Fitness hosted the 3rd annual Run to the Sun Fun Run 5K and Kids’ K benefitting Beyond Batten Disease Foundation. What started as a cold and rainy morning turned into a wonderful event filled with fitness, family and philanthropy that raised over $8,200 for research!

VIEW/DOWNLOAD PHOTOS from the event, courtesy of Kasandra Keyes.

*Special thanks to Ballooms Austin, Kula Karate, Kasandra Keyes and the Austin Youth Fitness coaches, Allison Phillips, Cindy Samok, Dana Reyna, Brandon Batiansila, Courtney Ewing, Emily Chauvin and Larry Chauvin.

Interview: Co-Founder, Charlotte Benson on coping with a child’s terminal illness

Listen to BBDF co-founder, Charlotte Benson as she discusses coping with a child’s terminal illness on The TKO Show with Kara Ro.

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

Thank you for supporting BBDF in 2017!

Our first newsletter of 2018 is here and we are thrilled to announce that we have raised over $3.5 million of the $6 million we need to fund the treatment for juvenile Batten disease! We could not have done it without our family and community supporters who fundraise for us, spread awareness and connect us to other foundations. You can read the full newsletter HERE!

Austin Kids host Bake Sale for Batten!

We love our young philanthropists who branch out on their own to raise awareness and funds for BBDF! Olivia and Finley Brown, Claire and Tripp Craddick, Wyatt and Flynn Eby and Owen Strauss hosted an impromptu bake sale in their neighborhood that raised $152! Flynn and Olivia made all of the cupcakes from scratch and then Wyatt and Finley helped them sell them. The other kiddos started as customers and then stayed to help out! If you want to find out how your child can Be the Change please click HERE for more information on our kids fundraising campaign.

BBDF Welcomes Tyler’s Mission

BBDF Welcomes Tyler’s Mission to our family of donor advised funds. By pooling resources and connecting communities we are able to expand our impact and reach to accelerate research. With their motto “GO TYLER, BEAT BATTEN” the Kim’s have already raised over $20,000 for research and we are so grateful to have them join forces so that we can one day eradicate juvenile Batten disease for Tyler and the hundreds of other children who are affected.

Last year, the Kim family received the devastating news that their youngest child, Tyler, suffers from juvenile Batten disease. The Kims quickly reached out to Beyond Batten Disease Foundation for help and guidance. To find out more about Tyler’s Mission visit the website.

“While our hearts are broken, we are incredibly blessed that today, Tyler is in great physical and mental shape… Our family and Team Tyler’s mission is to find a cure and defeat Batten disease.” – The Kim Family

In Memory of Tyler Allman

Tyler Pershing Allman

April 9, 2001 – January 21, 2018

Our community lost a super hero when Tyler Allman passed away on January 21, 2018. The Allman family and the Team Tyler community have been committed BBDF partners and our hearts and condolences go out to them. You can view their family story and donate in memory of Tyler at tylerallman.com.

“Surrounded by his parents and brother, Tyler peacefully entered the Kingdom of Heaven on January 21, 2018… Our son Tyler brought more inspiration in his 16 years than most do in a lifetime. Tyler was born with Juvenile Batten Disease but didn’t show signs of the terminal, neurodegenerative disease until he was 8 years old. Tyler loved every sport and was born a natural athlete like his dad. Tyler played t-ball until he began to lose his fine and gross motor skills, his vision, and suffered from seizures and eventually was no longer able to walk or talk. His favorite team was the Cubs and there was always a pitching machine or a batting tee in our backyard. Ty loved getting up early as a 6-year-old to go golfing with his dad or hitting golf balls in the woods behind our home. He loved the adventure of riding his dirt bike so far out that we couldn’t see him, but we were always thankful for his return.” 


Austin American Statesman – Austin boy trying to raise $1 million for Batten disease treatment for sister

When his parents set out to raise $6 million in two years to fund a Food and Drug Administration clinical trial for a possible treatment for Batten disease, Garland Benson, 13, decided last March he was going to raise $1 million of that to help find a treatment for his sister, Christiane. He would do it, he decided, by asking 100,000 people to give $10. READ THE FULL STORY HERE

Garland Benson: KVUE Daybreak All Star!

Garland Benson was recognized by the ABC News affiliate, KVUE for his efforts to raise $1 million to fund a treatment for his sister, Christiane, who suffers from juvenile Batten disease. Garland has raised almost $227,000 so far and is getting closer every day! Check it out and see how you can #BEaHero today and help fund a treatment for Christiane and all of the other children who suffer from Batten disease. Watch the Video HERE.

Research Update from Dr. Marco Sardiello

BBDF has partnered with Texas Children’s Hospital (TCH) to provide informational videos on the work being done at the Jan and Dan Duncan Neurological Research Institute (NRI) in Houston, TX.

In this video Dr. Marco Sardiello dives into BBDF funded research and the discovery of TFEB and it’s effects on lysosomal storage diseases, including Batten disease.

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