unitedpompe.com
United Pompe Foundation
http://www.unitedpompe.com/magazine.cfm
EP Magazine Article Living with Pompe Disease. EP Magazine Article Living With Pompe Disease. Exceptional Parent Magazine Sept. 2003. Living With Pompe's Disease. By Julia Steele Reid. What is Pompe's Disease? What Signaled a Problem? David and Kathy Hamlin knew that their son, Eric, had started walking a bit late (just before age two) and walked a bit oddly. Still, they didn't think much of it until one day when David took Eric with him to a doctor's appointment. Eric was three years old then. At the ne...
maddiesmission.blogspot.com
Maddie's Mission: Valuable References
http://maddiesmission.blogspot.com/p/reference-information.html
Experiences of a family along the journey of Pompe Disease. PLEASE FIND A FEW LINKS BELOW WITH VALUABLE INFORMATION. Pompe disease and Pharmaceutical Companies. Http:/ www.bmrn.com/patients-physicians/pompe-disease.php. Acid Maltase Deficiency Association (AMDA). International Pompe Association (IPA). Association for Glycogen Storage Disease (AGSD). United Pompe Foundation (UPF). Running for Rare Diseases. Advocacy and support services. Muscular Dystrophy Association (MDA). Parent to Parent (P2P) USA.
unitedpompe.com
United Pompe Foundation
http://www.unitedpompe.com/events.cfm
EP Magazine Article Living with Pompe Disease. 4th Annual Duke Pompe patient meeting. 2016 UPF/DUKE INFANTILE MEETING. 4th ANNUAL UPF/DUKE ADULT POMPE PATIENT MEEETING. POMPE MARATHON:My name is Paul McIntosh. I am 24 years old and I am a second year medical student at the University of North Carolina School of Medicine. Two years ago I was diagnosed with late onset Pompe disease. United States Pompe Community Update - October 17, 2014. UNITED STATES POMPE COMMUNITY UPDATE, AUGUST 1, 2014. AMICUS POMPE C...
unitedpompe.com
United Pompe Foundation
http://www.unitedpompe.com/jayden.cfm
EP Magazine Article Living with Pompe Disease. If you would like to make a donation in memory of JAYDEN TERRENCE JOHNSON, please specify Jaydens name on the donation. Please click here to make the donation. Jayden would have been 11 years old on April 10, 2014. He is one of oldest and longest treated Infantile Pompe patients in the world. And he began infusion treatments at Phoebe Sumter Hospital, so he could be closer to his home in Americus, GA. Like most all the children in the United States with Pomp...
unitedpompe.com
United Pompe Foundation
http://www.unitedpompe.com/articles2.cfm?Article_Selected=355
EP Magazine Article Living with Pompe Disease. The Team Behind the Treatment. By Marsha A. Green. But now, because of Myozyme - a treatment that people at Duke spent more than a decade shepherding from the molecular biologist's bench to the patient's bloodstream - Yamila has a future. The baby, suffering from Pompe disease, was weak and fragile. The family, desperate to save the child, turned to their community and raised money for a $250,000 bone marrow transplant. Their desperate hope that the ...I wen...
unitedpompe.com
United Pompe Foundation
http://www.unitedpompe.com/videospick.cfm
EP Magazine Article Living with Pompe Disease. Video name: ESH Gait trainer. Please select your connection speed. Video name: ESH Aqua Therapy. Please select your connection speed. Video name: ERIC BASEBALL AUGUST 2007. Please select your connection speed. Video name: AUGUST 2007 EXERCISE. Please select your connection speed. Video name: MARCH 2007 EXERCISE. Please select your connection speed. Video name: Video update on Stacy June 06. Please select your connection speed. Video name: ESH Truck Nov.06.
unitedpompe.com
United Pompe Foundation
http://www.unitedpompe.com/donations.cfm
EP Magazine Article Living with Pompe Disease. If you would like to make a contribution. To United Pompe Foundation,. Make your check payable to:. 5100 N. Sixth St. #119. Fresno, CA 93710. Your contribution is tax deductible. 2016 UPF/DUKE INFANTILE MEETING. 4th ANNUAL UPF/DUKE ADULT POMPE PATIENT MEEETING. United States Pompe Community Update - October 17, 2014. UNITED STATES POMPE COMMUNITY UPDATE, AUGUST 1, 2014. Â Evidera is recruiting adults with late-onset Pompe disease for an Interview Studyâ.
unitedpompe.com
United Pompe Foundation
http://www.unitedpompe.com/guestbook.cfm
EP Magazine Article Living with Pompe Disease. 2016 UPF/DUKE INFANTILE MEETING. 4th ANNUAL UPF/DUKE ADULT POMPE PATIENT MEEETING. POMPE MARATHON:My name is Paul McIntosh. I am 24 years old and I am a second year medical student at the University of North Carolina School of Medicine. Two years ago I was diagnosed with late onset Pompe disease. United States Pompe Community Update - October 17, 2014. UNITED STATES POMPE COMMUNITY UPDATE, AUGUST 1, 2014. DUKE INFANTILE ONSET POMPE PATIENT MEETING 2014.
unitedpompe.com
United Pompe Foundation
http://www.unitedpompe.com/articles.cfm
EP Magazine Article Living with Pompe Disease. Clinical Trial Experiences of Patients. BioMarin is currently seeking patients for a Phase 3 clinical trial in Late Onset Pompe Disease. Amicus Therapeutics Announces First Patient in Phase 2 Study for Pompe Disease. UNITED STATES POMPE COMMUNITY UPDATE, AUGUST 1, 2014. Genzyme Receives Label Expansion for Lumizyme (alglucosidase alfa) in the United States for the treatment of Pompe Disease. Expression of Hope 2014. ADVANCE Study Fact Sheet. United States P...
unitedpompe.com
United Pompe Foundation
http://www.unitedpompe.com/aboutpompe.cfm
EP Magazine Article Living with Pompe Disease. Pompe disease is inherited in an autosomal recessive manner, meaning that an affected individual must inherit an abnormal allele from both parents. Thus, the probability of carrier parents having a child with Pompe disease is one in four for each pregnancy. Electron microscopy demonstrates the various features of baseline skeletal muscle pathology in an infantile Pompe patient (magnification 6500x image courtesy of Genzyme Pathology). 1 van den Hout HM, Hop ...
