Nov 29, 2021 | PATIENTS
November 2021 My name is Haley Hayes. I am from Virginia. I am 16 years old and was diagnosed with infantile-onset Pompe DiseaseA severe form of Pompe disease that begins in infancy and often affects the heart and muscles. More at 6 months old. I will be sharing my...
Oct 14, 2021 | WEBINARS
To watch the Webinar, please click here!
Oct 6, 2021 | PATIENTS
August 2021 My name is Caitlin Naldoza. I am 17 years old and was diagnosed with late onset Pompe DiseaseA form of Pompe disease that begins after infancy and usually progresses more slowly. More at 5 years old. I will be sharing my experience being a teenager living...
Sep 15, 2021 | NEWS
Hi All, We are excited to announce that the webinar is on for Friday, October, 8, 2021 at 1 PM CST. If you have already registered, you don’t need to do anything. If you have NOT registered yet, it’s not too late! Please click here to register. And,...
Aug 6, 2021 | NEWS
PARIS – August 6, 2021 – The U.S. Food and Drug Administration (FDA) has approved Nexviazyme® (avalglucosidase alfa-ngpt) for the treatment of patients one year of age and older with late-onset Pompe diseaseA form of Pompe disease that begins after infancy and...
Aug 5, 2021 | PATIENTS
A year ago today [April 29, 2004] our son, John, passed away from Pompe Disease. He was four years old. Most of you will not recognize his name, but you all should know who he is. John was patient 101 – the first person to receive the CHO Enzyme Replacement Therapy...
Aug 5, 2021 | PATIENTS
A Mothers Anguish April 6, 2002, was the saddest day of my life. Senselessly, while in the care of an inept medical system, my wonderful daughter passed away. Her name was Patty. Everyone, especially the medical profession, should be aware of the potential for this to...
Aug 5, 2021 | PATIENTS
This is the story of me from before I was diagnosed with Pompe’s disease. I hope this helps to enlighten the medical community as well as other Pompe patients. Back in 1965 my Mom was told that I would be born on December 2nd. This date came and went and the...
Aug 5, 2021 | PATIENTS
Our son Luke, the youngest of four children, was diagnosed with Pompe’s Disease at 5 months of age. He had a very normal birth and development but was a floppy baby. Luke was first hospitalized at 6 months of age with RSV virus and pneumonia after which he was...
Aug 5, 2021 | PATIENTS
I was diagnosed in 1991 at age 22 with AMD. I also have a sister who is severely affected by the disease. She was diagnosed 13 years ago at age 20. In college, I began to notice that it was getting difficult to walk upstairs. I would get very winded, and my muscles...
