If you missed the Celebrating Men in the Rare Epilepsies Making a Difference - we strongly encourage you to take a listen here. Thanks to moderator Glen Lloyd (EF, Minnesota) and panelists Justin West (KFNT1), Mike Graglia (SynGAP), Bo Bigelow (HAO-FOUNTAIN Syndrome, USP7 Gene), and Jeff D'Angelo (CHAMP1) for their candor about their journeys and challenges - past and present. This is straight talk from extraordinary fathers, caregivers, husbands, and leaders. Many gems for all epilepsy caregivers and men in general.
If you missed the 2022 Upper Midwest Rare Epilepsy Conference, you can listen to Saturday Session and Day 2 & 3 Bonus Sessions. Listen to a Q&A discussion with Karen Utley, President and Co-founder, International Foundation for CDKL5 Research; Coordinating Committee Member, Rare Epilepsy Network; Director of Patient Advocacy, Texas Rare Alliance at 2:40:23.
Learn more about funding for rare and ultra-rare neurological diseases. The National Institute of Neurological Disorders and Stroke (NINDS) recently created the Ultra-Rare Gene-Based Therapy (URGenT) Network. The URGenT Network supports the development of state-of-the-art gene-based therapies for ultra-rare neurological diseases. It provides funding and resources (X01 and U01) to advance gene-based therapies for ultra-rare neurological diseases from late-stage pre-clinical development into first-in-human clinical testing.
Where else are YOU raising awareness of rare epilepsies? Let REN know.
The REN Coordinating Committee
PS: MEMBERS ONLY: Our next mtg is July 25 at 1 PM ET. No meeting in August.
