Meet my two granddaughters, Jamie Rae and Layla Grace Alacan who are battling 4H Leukodystrophy. Their mother Courtney describes them as her warrior babies, and I could not agree more. I hope by doing this event many more people will join the fight against this terrible neurological disorder. –Eddie Alacan
4H leukodystrophy is a genetic disorder that causes a lack of myelin, the fatty white substance that covers and protects nerve cells in the central nervous system. The missing myelin causes problems with balance and walking, tremors, speech difficulties, uncontrolled muscle contractions, stiff muscles, and restricted movements. Other symptoms include abnormal tooth development, atypical puberty, short stature, and near sightedness.
THERE IS NO CURE. HELP US FUND RESEARCH!
Adults $25 and $100 in pledges from supporters
Children are free
Register at ULF.org or on-site April 30
Learn more by contacting Eddie Alacan
firstname.lastname@example.org or 386-960-4393
Supported by the United Leukodystrophy Foundation
We are driven by the dream that one day, every child with 4H Leukodystrophy will have the chance to live a long, healthy life.
So we fight for these children by acting as a catalyst and a connector—bringing researchers together to accelerate the pace of discovery, while connecting families with vital education resources and emotional support.
We won’t stop until we find a treatment and, ultimately, a cure.
Your generous donation funds critical research into life-changing treatments and a cure for 4H Leukodystrophy, as well as vital programs that connect, support and empower families affected by this rare disease. All it takes is a simple click.