Parents and Rare Sisters founders Jon and Beth Fries appeared on CBS Denver on Monday, April 8, where they shared the story of their two daughters Cecilia and Lilly who are currently living with juvenile Batten disease. Jon and Beth also invited the community to participate in the inaugural Expect Miracles Rare Sisters 5K, taking place Sunday, April 28 at Lake Arbor in Arvada, Colorado—sign up or make a donation at https://beyondbatten.org/events/expect_miracles_5k/
Garland Benson shared his story with the world last night on CBS News, calling on each of us to help put an end to Batten disease and not just save the life of his sister, Christiane, but all those living with this traumatic and fatal illness. Click the story links below and discover how this incredible young advocate and loving brother took it upon himself to raise the final $1 million of a $6 million campaign to fund an FDA approved clinical trial.
Thank you to all who have supported Garland.
$790,466 and counting to $1 million!
2018 has been filled with fundraising, partnership and advocacy here at BBDF. With that said we wanted to share some of the media coverage for the foundation and our family partners around the country!
Soon after the first-ever therapy for Batten disease was approved by the U.S. Food and Drug Administration (FDA) in April 2017, Danielle Kerkovich, principal scientist at the Beyond Batten Disease Foundation, started fielding questions from families wondering if their child could take the new treatment.
Kerkovich had to tell parents that they, unfortunately, could not. That’s because the Beyond Batten Disease Foundation works with kids who have the CLN3 form of Batten disease. Brineura (cerliponase alpha), developed by the pharmaceutical company BioMarin, can’t be used for CLN3 — it was designed for patients with the CLN2 form of the disease.
It is an exciting time for the Foundation and our affected families as we near the possibility of a clinical trial for the first-ever treatment for juvenile Batten disease. Our February newsletter highlights a new donor advised fund, Bind Up Batten, three community fundraisers, a plethora of ways to get involved and of course your monthly update on the Be Project, which is now up to $3.7 million dollars towards our $6 million goal! You can read the full newsletter HERE!
BBDF and the Will Herndon Research Fund would like to thank everyone who tuned into, watched, shared, and recorded the “Faces of HOPE” special on ABC13 Houston featuring Will. The special included 4 segments, each highlighting a child with a rare and hard-to-detect medical condition.
“For years these children were medical mysteries. Now, they are getting answers and treatments thanks to cutting-edge reserach being done right here in our own backyard.”
You can watch the FULL SPECIAL HERE or click through to segment 3 to watch the segment on Will. #SAVEWILL
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!
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