BBDF Blog

In it’s 4th year, the annual fall fundraiser, Family Night, is set for Sunday, September 23, 2018 and BBDF is excited to announce that this year’s event will be co-hosted by the Louise H. Batz Patient Safety Foundation based in San Antonio, TX. If you haven’t attended Family Night in the past, we have made quite a few changes and cannot wait for you to join us in “Splashin’ for a Passion!” For more information, including sponsorship packages and ticket information please visit beyondbatten.org/events/family-night.

BBDF Welcomes Chase the Cure 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 Chase and the hundreds of other children who are affected.

Together Chase the Cure and Beyond Batten Disease Foundation are spreading awareness and raising funds for medical research to eradicate this disease. To find out more about Chase the Cure and the Peterson family visit the website.

Spearheading a unique, cohesive strategy, Beyond Batten Disease Foundation has added ThinkGenetic to its collaborators by joining the ThinkGenetic Advocacy Partner Program.

“Partnership and collaboration have been the cornerstone of Beyond Batten Disease Foundation’s success and we are excited to work with ThinkGenetic, ” said Mary Beth Kiser, President and CEO of Beyond Batten Disease Foundation. “As a rare disease patient advocacy group, we appreciate the importance of creating awareness and sharing information.  Beyond Batten has a robust research portfolio and a principal scientist on staff.  We hope to share information and serve as a resource to juvenile Batten patients and beyond.  ThinkGenetic is the perfect platform to help us do that.”

READ FULL ARTICLE HERE

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.

CLICK HERE TO READ THE FULL ARTICLE

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 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.

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