Jaye Guerin's Fundraiser
Help us make an impact for LBSL research!
Join me and help make a difference with your gift today!
-
Jaye Guerin
"Wishing for many financial blessings to further research for Cure LBSL!"
$100
We are fundraising to help people born with LBSL, a rare genetic disease that causes damage to the white matter of the brain, consequently causing mitochondrial disfunction, rendering neuromuscular issues in different areas of the body.
September 20 is LBSL Awareness Day. Are you aware...
- Less than 300 people in the world have LBSL?
- Most doctors have never even heard of LBSL?
- LBSL kids and adults sometimes need special care and accommodations at school and work to keep them safe?
- LBSL knows no geographical boundaries?
LBSL found my family and we have been on a 4 year journey to get answers. This is a very rare condition that effects each patient differently. We were able to travel to the Kennedy Krieger Institute in Baltimore, MD in July to witness the research and visit with the doctors and scientists who care deeply about developing therapies, treatments and a possible cure for LBSL.
This research is so important to the LBSL patients and their families who face many challenges. Funding the research is challenging as rare diseases don't get the attention and financial support that the more prevalent and well diagnosed diseases get. Beyond the initial diagnosis and finding information about the disease, there are also physical and emotional impacts of the disease itself on every member of the family. Families often spend an enormous amount of time finding the right doctors and services, as well as explaining their child's condition to teachers, caregivers or medical providers who have never heard the word "leukodystrophy" before. These challenges are all the more critical in emergency situations.
Thanks to Cure LBSL no patient has to navigate these challenges alone. And with your help we can ensure there is always someone at the other end of an email or phone to provide translated resources, connect people with doctors and researchers, and let them know they are never, ever alone. Cure LBSL is working hard to make life easier for patients and their families, as well as investing in science that leads to treatments and cures.
We are asking your help to rally friends, family, and networks to support this important work. By helping us financially, you will help patients and families get important resources and support on their journey.
A little hope for patients and their families goes a long way. Future treatments and the knowledge and support to live their best life can be made possible with your gift. Your donation to Cure LBSL is fully tax deductible and will bring much needed funding toward a cure for this disease.
Thank you for your support!