BENEFITING: Sanfilippo Research Foundation, Inc.
ORGANIZER: Sanfilippo Research Foundation, Inc.
ABOUT Lucas Montgomery :
Lucas was diagnosed with Sanfilippo Syndrome in 2006 at the age of 9. The diagnosis came after several years of searching for answers to why he was losing speech , fine motor skills , inability to sleep at night , restless pacing , unending bouts of upper respiratory infections and mobility issues. With the diagnosis came the words "no treatment , no cure." As a family , and out of our love for Lucas we felt the need to do something . We started hosting awareness fundraisers within months of his diagnosis .
Since the time of diagnosis , Lucas is now wheelchair bound , he is Gtube dependent to receive all of his nutrition and medications , he suffers from seizures and painful dystonia episodes and he has lost his speech except for a few single words . Despite these devastating progressive changes Lucas continues to smile heroically through it all .
Your chance to help is here. By donating you are providing hope to other families and children . By donating you will be providing a chance at life by supporting Dr. Fu at Nationwide Children's Hospital and the gene therapy clinical trial . Donate today and pass the word about The Purple Lemonade Stand .
Donations will go to the Sanfilippo Research Foundation
About the Foundation :
Sanfilippo Research Foundation, Inc. wrote -
Benjamin Siedman had Sanfilippo Syndrome, a rare & fatal inherited genetic disorder. Ben & thousands of children like him have a life expectancy between 12 and 20 years. Today there is hope.
The Foundation has been proud to support the research of Dr. Haiyan Fu at Nationwide Children's Hospital for over a decade—her gene therapy work along with that of Dr. Douglas McCarty is poised to move from the lab to human clinical trials!
Sadly this breakthrough was not in time for Benjamin, he passed away earlier in 2014, but we are committed to creating a different outcome for his friends and thousands of others dealing with this disease.
Please join us in a simple glass of Purple Lemonade & change the future for all that suffer from Sanfilippo Syndrome. Thank you!