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Pompe Warrior Foundation

$3,295 of $50,000 goal

Raised by 29 people in 3 months
Created October 3, 2018
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 $50,000 to fund a first of its kind animal study.  The study will investigate the impact of dietary changes on Pompe Disease.  The study will be conducted by the renowned Dr. Dom D'Agostino who has been focused primarily on studying the neuroprotective and anti-seizure effects of the ketogenic diet and dietary ketone supplementation for the past 10 years.  The disorders he studies includes rare diseases like Glucose Transporter Type1 Deficiency syndrome, Angelman’s syndrome and more recently Kabuki syndrome.

 
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.  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.  Recent testing shows that Leo now has the heart of a healthy person and Leo will be taken off the vent and the trach taken out on October 29th! 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.
 

Dr. Dominic D’Agostino  is an Associate Professor with tenure at the University of South Florida’s Morsani College of Medicine and is a researcher at the Institute for Human and Machine Cognition (IHMC). Since 2006 Dr. D’Agostino has taught at USF in the Department of Molecular Pharmacology and Physiology with an emphasis on such topics as Biochemistry, Neuropharmacology, Physiology, Neuroscience and Metabolism. For over 10 years his research has focused on developing and testing nutritional strategies for neurological diseases and cancer, and also for warfighter safety and resilience in extreme environments. Dr. D’Agostino’s research is supported by the Office of Naval Research (ONR), Department of Defense (DOD) and private foundations.  In addition to the lab research, Dr. D’Agostino personally tests these nutritional strategies in daily life, even on a NASA analog mission to Mars (NEEMO 22 ).  The nutrition and metabolism research being done for the military and NASA also has therapeutic relevance for a broad range of disorders, including Pompe. 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.     

Visit our website at - www.pompewarriorfoundation.com 

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Update 2
Posted by Anne Vanek St Martin
2 months ago
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See what Pompe Warrior Foundation is doing to help rare disease patients work within the current medical system!!
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Update 1
Posted by Anne Vanek St Martin
3 months ago
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Check out the Pompe Warrior Foundation educational video series we are working on....
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Read a Previous Update

$3,295 of $50,000 goal

Raised by 29 people in 3 months
Created October 3, 2018
Funds raised will benefit:
Pompe Warrior Foundation
Certified Charity
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West St Paul, MN
EIN: 821706644
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* If, after reasonable efforts, PayPal Giving Fund cannot deliver donations to this charity, the funds may be donated to another charity per PayPal Giving Fund’s policies.
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