Updated: November 1, 2021
“Papa, I don’t want to die!” These five words, uttered more than once by 12-year old Adeline Liénard, pierce the heart of her dad, Dennis. Adeline has a degenerative genetic-based neurological illness called Spinal Muscular Atrophy with Progressive Myoclonic Epilepsy, (SMA-PME). This very rare childhood illness causes muscular weakness and brain disorders. Adeline endures more and more frequent epileptic seizures, muscular weakness, trembling, and impaired hearing. As her condition worsens, she can expect increasing weakness and muscular atrophy. Eventually, the disease will affect her breathing. Doctors have given her four more years to live.
….BUT THERE IS HOPE!
Dennis and his family have teamed with other parents whose children are suffering from this illness to find a cure for their children. Thanks to multiple fund-raising efforts since 2019, French researchers have begun to make headway. They have found a treatment that could slow the progression of the illness and allow the children to live longer. Even more promising, since SMA-PME is a genetic disease, researchers have identified a way forward to a cure based on the latest advances in research and gene therapy.
HELP US FIND A CURE BY 2023!
Finding a cure through cutting-edge genetic research requires money. Based on the cost of existing genetic therapy, researchers estimate that it could cost between $1.8 and $2.3 million to find a cure. WE NEED YOUR HELP! Our organization, SMA-PME Research, is seeking donations to help find a cure. Phase I of 2021 SMA-PME fundraising is well underway, with over $290,000 raised thus far in France. These funds are being used to implement SMA-PME mitigation strategy for Adeline and other affected children, and to finance genetic research.
Much more needs to be done for researchers to find a cure.
AND WE CAN GET THERE!
The goal for Phase II fundraising is $1.2 million to find a cure.
Please join us in the fight to help Adeline and other children like her recover their childhoods and live!
OR donate by Zelle to hope4adeline@gmail.com
SMA-PME Research 