Beyond Batten Disease Foundation Partners with ThinkGenetic in Support of Mission
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.”
A rare, fatal, inherited disorder of the nervous system, Batten disease, also known as neuronal ceroid lipofuscinosis, usually begins in childhood. The first symptom is usually progressive vision loss in previously healthy children, followed by personality changes, behavioral problems and slow learning. Seizures commonly appear within 2-4 years of vision loss. Progressive loss of movement and speech start with clumsiness, stumbling, and Parkinson-like symptoms; eventually, those affected become wheelchair-bound, are bedridden, and die prematurely.
“Focusing on hope in light of a fatal childhood condition is inspiring,” explains ThinkGenetic President, Len Barker. “I am honored to welcome the Beyond Batten Disease Foundation to the ThinkGenetic Advocacy Partner Program so we can help to bridge the gap between patients and much needed knowledge about Batten disease.”
Beyond Batten Disease Foundation was established to eradicate juvenile Batten disease by raising awareness and funds to accelerate research for a treatment or cure. Beyond Batten Disease Foundation is working with academia, the pharmaceutical industry, and government agencies to cross the “Valley of Death” between initial scientific discoveries and meaningful progress toward treatments and cures.
ThinkGenetic boosts awareness of Batten disease and other genetic disorders through its resources for patients, families, and those that are undiagnosed.
About the ThinkGenetic Advocacy Partner Program: ThinkGenetic enters into Advocacy Partner agreements with organizations, support groups and charities to share information, increase public awareness of genetic conditions and provide trustworthy resources to those living with or caring for someone with a genetic disorder. Learn more and view current partners at news.thinkgenetic.com/advocacy-partner-program or email advocacy@thinkgenetic.com for information about enrollment in the program.
About Beyond Batten Disease Foundation: Beyond Batten Disease Foundation was established to eradicate juvenile Batten disease by raising awareness and funds to accelerate research for a treatment or cure. Learn more at https://beyondbatten.org.
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