Join Beyond Batten Disease Foundation June 1-2 in raising awareness and education about juvenile Batten disease
AUSTIN, Tex. May 31, 2013 – In recognition Batten Disease Awareness Weekend June 1-2, 2013, Beyond Batten Disease Foundation (BBDF) would like to invite communities everywhere to become learn more about the struggles and challenges of children affected by Batten Disease.
Batten disease is a fatal, inherited disorder of the nervous system that begins in childhood. Early symptoms of this disorder usually appear between the ages of five and 10, when parents or physicians may notice that a previously normal child has begun to develop vision problems or seizures. In some cases the early signs are subtle, taking the form of personality and behavior changes, slow learning, clumsiness, or stumbling. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten disease become blind, bedridden, and physically and mentally incapacitated, requiring 24-hour care. Batten disease is always fatal, often by the late teens or twenties.
It is difficult to imagine a worse fate for a child, but with your support, there is hope. In August 2008, Craig and Charlotte Benson established Beyond Batten Disease Foundation after their then five-year-old daughter was diagnosed with the disease. BBDF is uniquely positioned to accelerate the pace of progress towards developing treatments, and one day, a cure, for Batten disease. Our founders and board members have extensive contacts and relationships in the scientific and medical research communities. As a result, we have made exciting progress in the five years since the foundation’s inception. We have developed an easy and inexpensive test to prevent Batten and hundreds of other rare and devastating diseases, which recognized on Time magazine’s Top Ten Medical Discoveries in 2012. We have also created a strategy for success modeled after and advised by the most successful medical research foundations and government programs which will allow us to continue to invest in research projects and strategies that are accelerating progress toward a cure.
BBDF would like to use this weekend to raise awareness and educate others about Batten disease. We encourage the Batten patient community and the public to get involved by sharing education resources, promoting awareness via social media and donating to help us continue our progress in Batten disease research. Together, we can create a brighter future for children with Batten disease.
BBDF is a 501c(3) non-profit organization dedicated to improving the lives of children with Batten Disease. For more information, visit www.beyondbatten.org or follow us on Facebook www.facebook.com/BeyondBattenDiseaseFoundation or Twitter www.twitter.com/BeyondBatten.
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