Posted at: 01/25/2019 12:17 PM
Updated at: 01/25/2019 3:53 PM
The mission of the Pompe Warrior Foundation is to promote research, educate, and empower individuals and families affected by Pompe Disease and other rare diseases. We hope to highlight the importance of diet in the treatment of these diseases. We will support research into new dietary treatments and utilize that research to educate individuals and the medical community. We hope to create a happy and healthier lifestyle for all involved. We will empower patients, families and medical professionals to explore how dietary changes may play a role in the treatment of these rare diseases.
The organization is unique because it was started by two parents named Denis and Anne St. Martin from West Saint Paul, Minnesota who refused to accept the prognosis they received from doctors when their young son, Leo, was diagnosed with a rare genetic disease called Pompe. With Pompe your body lacks the enzyme to breakdown a complex sugar called glycogen. The excess glycogen builds up in your heart, lung, and outer skeletal muscles. Leo's heart was 2/3 the size of his chest cavity when he was diagnosed. Infantile-onset Pompe Disease can result in death in early childhood. With the help of their family friend, Don Bennett, who served in Iraq alongside Anne's brother Denis and Anne determined that changing Leo's diet could benefit his health. Since they have began using dietary interventions Leo has had his breathing tube removed, he eats solid foods, and his heart and function have returned to normal. Denis and Anne formed the Pompe Warrior Foundation because it is so important to them to help others. The state of Minnesota recently added Pompe Disease to the list of conditions they test for with newborn screening. With newborn screening there will be more children diagnosed earlier and more Minnesota families effected by Pompe Disease. Anne and Denis know that other families are struggling with this disease and they are working tirelessly to ensure the work they have done in regards to dietary intervention to help their own son doesn't stop with just their family.
Pompe Warrior Foundation is starting a study at the Mayo Clinic on the effects of a ketogenic diet as one of the treatments for Pompe Disease. The Mayo will hopefully be taking new children into the study by March 2019. We are using funds from Pompe Warrior Foundation to help sponsor a family and their travel expenses to come to the Mayo Clinic. We will also be using funds to help them purchase other items needed for the diet that insurance will not cover items like a glucose meter, ketone strips, food scale, ect.. We are hoping to raise $20,000 by March 2019 to sponsor 5 families. Help Pompe Warrior Foundation by visiting them online at www.pompewarriorfoundation.com for more details.