Did you know research animal models must follow FDA regulations? Learn more about the obstacles researchers face. This is a must-read for any and all! Read Noriko Merida’s article here.
We love our supporters! We are incredibly grateful for your unwavering dedication and support. With your help, we WILL eradicate Batten disease. I Live Here, I Give Here is awarding two partner nonprofits who exemplify strong donor relations with prizes at their Big Give Event.
Please vote for Beyond Batten Disease Foundation!
Voting closes September 3rd, so vote now!
A shout out to Lynn Boswell for her help producing press releases for Run to the Sun and the foundation. By sharing her writing talent, Lynn has helped the foundation gain exposure and raise awareness of Batten disease in the media and news. THANK YOU to Lynn for sharing your Jenyis with us!
Did you know ALS and Batten disease are both neurodegenerative diseases? In fact, Batten is the most common pediatric neurodegenerative disorder.
Chris Martin of CAVU Media Works took on the #ALSicebucketchallenge with a twist. Thank you for helping raise awareness!
Danielle Kerkovich, PhD, traveled to Philadelphia, PA, to speak at the Rare Disease Collaboration Summit hosted by ExL Pharma on August 12-13, 2014. Dr. Kerkovich’s talk was entitled “Extra Levels of Care: Working with Patients, Parents, Caregivers, and Review Boards on the Development of Orphan Drugs for Pediatric Indications.” The invitation was sparked by recognition of BBDF’s close connection to other Batten and brain disorders organizations. The Rare Disease Collaboration Summit harnesses the collective resources of industry and patient groups into creating working-group relationships that shape legislation and accelerate regulatory approval. It builds lasting partnerships with patient advocacy groups in order to construct more flexible and patient-centric clinical trial protocols and accelerate the regulatory approval of orphan drugs. The summit was incredibly informative and Danielle brings that knowledge back with her to the Foundation.