Manuscript by da Costa, Anaelle; Metais, Thibaud; Mouthon, Franck; Kerkovich, Danielle; Charvériat, Mathieu, was successfully accepted by the journal “Fundamental & Clinical Pharmacology.”
The FDA has awarded Orphan Drug and Rare Pediatric Disease designations to Beyond Batten Disease Foundation for BBDF-101.
BBDF’s principal scientist, Danielle Kerkovich, recieves recognition for her paper as one of the most read in Molecular Genetics & Genomic Medicine.
Judy and Courtney Stecker establish the Charles “Wheeler” Stecker Research Fund to join forces in raising funds for a cure after their son Wheeler was diagnosed with Batten Disease.
Friends and supporters of Beyond Batten Disease Foundation gathered on Sunday, April 7 for the 10th annual Battlin’ Batten in Baffin Fishing Tournament in Baffin, TX.
BE Project – Thank you from the Bensons from Beyond Batten Disease Foundation on Vimeo.
In 2016, after 8 years of funding research for Batten disease, our research team was ready to take the next steps to advance our discovery of a treatment to slow the progression of Batten disease. As you know, The Be Project was launched to raise $6 million in 24 months in order to validate their findings, create patient registries, and advance a host of other necessary steps to prepare for FDA engagement and clinical trials. And, we did just that. WE DID IT!!! We achieved our goal, and we hope you feel so proud and take ownership in this enormous accomplishment!
We did it! Thank you from Garland from Beyond Batten Disease Foundation on Vimeo.
Impassioned by his sister’s life-long struggle with Juvenile Batten disease, Garland Benson pledged to raise $1M of the $6M needed to advance a promising treatment to clinical trials. He did it! Click the link below to hear his heartfelt thank you.
On Saturday morning, the weather was perfect just long enough for the Bensons to share some beautiful words of gratitude and to plant the “Triangle Oak” in honor of all of you. Thanks to those of you who came out. In case you weren’t able to be with us to include your name on the river rocks that were planted with the tree, we wanted to be sure to share their heartfelt message with you:
“They say the true meaning of life is to plant trees under whose shade you never expect to sit.
And, that’s exactly what you have done for our family! In our darkest hour, YOU planted this tree and placed Christiane beneath the only shade in an otherwise desolate and barren landscape. In a selfless act of compassion and love, you have supported us with an unfailing devotion to our family. And, after 10 years of hard work, and on the cusp of a clinical trial, you should be so proud for having put Batten disease on the map! There are simply no words to express the enormity of our gratitude for everything you have done over these last years.