Brineura Approval Invigorates Research, Awareness About Other Batten Treatments

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.

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Over $70,000 raised in February!

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!

High Schoolers Taking a Swing at Batten!

The Youth Leadership Committee hosted their first-ever fundraiser at TopGolf in Austin Texas on Sunday, February 18, 2018 and raised $9,684 for research! Special thanks to our sponsors Covert Auto Group, Jaguar Land Rover Austin, Smiles Austin, Tarrytown Pharmacy, HillCo Partners, Shannon Windham-Realtor, DeDe Church & Associates, LLC and Kasandra Keyes Photography + Design.

VIEW/DOWNLOAD PHOTOS HERE

BBDF Welcomes the Bind Up Batten Fund

BBDF Welcomes the Bind Up Batten Fund 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. We are so grateful to have them join forces so that we can one day eradicate juvenile Batten disease for Charleston and the hundreds of other children who are affected.

Last  year, the Klein family received the devastating news that their oldest son, Charleston, suffers from juvenile Batten disease. The Kleins quickly reached out to Beyond Batten Disease Foundation for help and guidance. To find out more about the Bind Up Batten Fund visit the website.

Faces of Hope: ABC13 Houston Features Will Herndon


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

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

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