The United Pompe Foundation was formed to assist patients and/or their families with medical costs and other expenses that these patients and families face and may not be able to cover, or fully cover, through their insurance. Another very important issue we all face is raising the public awareness of Pompe disease. As we are all aware there is very little public awareness of this devastating disease. The committee is comprised of Pompe patients and parents of Pompe patients so that we have a good understanding of the many problems those families must deal with on a daily basis. We hope to be a valuable resource that patients can turn to if they need help. If you have any questions, comments, or would like to help please contact us. click the logo to visit the site. Since 1980, the Make-A-Wish Foundation® has enriched the lives of children with life-threatening medical conditions through its wish-granting work. The Foundation's mission reflects the life-changing impact that a Make-A-Wish® experience has on children, families, referral sources, donors, sponsors, and entire communities. The Make-A-Wish Foundation® traces its beginning to one boy’s wish. In 1980, 7-year-old Christopher James Greicius was being treated for leukemia. Every day, he dreamed of becoming a police officer. click the logo to visit the site. There are many ways you can help in the fight against neuromuscular disease. Concerned individuals, companies and organizations have made it possible for MDA to continue its worldwide research efforts and nationwide programs to aid those with neuromuscular diseases and their families. click the logo to visit the site. The Children’s Rare Disease Network is creating an online community where children with rare diseases, their families, and the organizations that support them will have the opportunity to communicate, collaborate, become educated and tap existing resources, helping them with their daily challenges - introducing The Children’s Rare Disease Network. click the logo to visit the site. Home About Meet the Crowleys Extraordinary Measures Stay Connected Charitable Links Contact Us FOLLOW US: Books about the Crowleys