To donate via check:
Canavan Research Foundation
88 Rt. 37
New Fairfield, CT 06812
Our website is www.canavan.org
Children across the world are suffering from Canavan Disease, a rare neurodegenerative brain disease. They have a life expectancy of only 10 years, and can't walk, talk, or hold their heads up. But researchers have been tirelessly working for 26 years to bring to fruition an advanced gene therapy that has the capacity to save these childrens' lives.
My sister Lindsay is one of those children. Predicted to die by age 10, thanks to three gene therapies, Lindsay just turned 26. But she has started to deteriorate again, and still is severely handicapped. She still can't walk, or talk, or sit up.
The new gene therapy is able to target the white matter in the brain, where the disease sits, for the first time. This means that Lindsay and the other Canavan children could actually be cured.
10 Canavan children are slated to receive gene therapy in the spring of next year- but only with your help. Because Canavan disease is rare, it receives no government funding. All of the fundraising and research to date has been spearheaded by parents who have chosen to fight for their children's lives.
Yet the newest gene vector comes at a steep price tag - 5 million dollars, and each child's treatment incurs another 250K. With our partners at Cure Canavan, we have worked hard to raise over 4 million dollars so far. But we still need another 1 million dollars to pay for the rest of the vector production by the springtime.
After 25 years of tireless research, advocacy, and negotiating, it's about time we cure this disease once and for all.
Canavan treatment has been, and will be, utilized as the basis to cure other degenerative conditions, such as Alzheimer's and Parkinson's Disease.
Can we count on you to make sure that these adorable little kids get a chance at life? Will you be the hero that takes us over the finish line?