Pompe Warrior Foundation is a non-profit organization working to promote research as well as empower and educate patients and families impacted by Pompe Disease and other rare disease. An important first step in gaining ground for the use of dietary methods as a treatment option is the generation of data. During this holiday fundraising campaign, Pompe Warrior Foundation hopes to raise $20,000 to fund a first of its kind animal study. The study will investigate the impact of dietary changes on Pompe Disease.
The founders of the organization, Denis and Anne St. Martin, have a young son named Leo who is battling Pompe Disease. Pompe is a disease that makes lysosomes (which are like the digestive system of cells) unable to break down complex sugar. After receiving Leo's diagnosis Denis and Anne refused to accept the bleak outlook doctors provided for Leo based on current medications which are only 1 to 5 percent effective. They worked tirelessly to find alternative ways to treat Pompe and have had great success using specific dietary methods in conjunction with currently available treatment.
Leo's initial prognosis was very dire - when he was first admitted to the hospital he was in a very advanced stage of heart failure and soon after admittance Leo had a tracheotomy placed and put on a vent so he could breathe. Leo is on NO heart medication and his heart has completely normalized. The trach was taken out in October 2018. Leo is eating solid foods and talking non stop also things doctors never thought Leo would do. After seeing the tremendous improvements in their own son with the dietary changes Denis and Anne knew they had to do more to help others. They started the Pompe Warrior Foundation to help get the information out about the potential for dietary changes and the positive effects it can have on Pompe disease.
The Pompe Warrior Foundation appreciates any support that you can provide. Because our organization is made up solely of volunteers 100% of the money generated from this campaign will be donated directly to the University of South Florida to support research into the use of dietary treatment for Pompe Disease. Together with your help, we are confident that we can make a difference in the lives of those impacted by this awful disease.