Parent to Parent programs offer parent to parent support as a core resource for families with children who have a special health care need, disability, or mental health issue. Through a one to one "match" experienced support parents provide emotional support to families and assist them in finding information and resources. Parent to Parent programs […]
Tag Archives | Pompe disease
Living with Pompe Disease
WELLNESS & FOOD February 17, 2014
The Chicago Daily Herald recently printed an article about Melissa Palmer and Pompe disease affects her life. Parker lived for many years with Pompe disease as it went undiagnosed. Now she is receiving the treat for the lysosomal storage disease that she needs. To read the article please click here.
Pompe Disease Survivors at Duke
EVENTS August 20, 2013
Survivors of Pompe Disease gathered at Duke University medical center to celebrate the success of drug trials that began in 2004. The drug that treats Pompe Disease – Myozyme – was developed at Duke and the trials began there. To read more about the reunion, please click here.
Haley’s Ride Benefits People Living with Pompe Disease
EVENTS June 20, 2012
Recently a members from the EXILED Motorcycle Club of Bracey and members of the Lake Gaston, NC Volunteer Fire Department gathered with friends and family of Haley Hayes to ride for awareness about Pompe Disease. Proceeds from the event go to help children living with Pompe disease. Photo taken from the EXILED Motorcycle club Facebook […]
Exercise and Pompe Disease
WELLNESS & FOOD February 20, 2012
Check out this great article on livestrong.com on why exercise is important for people with Pompe Disease. Before starting any exercise regime it is important to talk to your doctor. To read the article, please click here.
United Pompe Foundation Patient Social @ Duke University April 19 – 21 2012
EVENTS February 8, 2012
The United Pompe Foundation will hold a patient social and meeting April 19-21 in North Carolina at Duke University. In addition to the social and networking time, there will be talks on current enzyme replacement therapy, the importance of diet and exercise as well as monitoring Pompe disease with MRIs. For more information about the […]
International Pompe Association
EVENTS, WELLNESS & FOOD November 11, 2011
Check out this Web site which is a great resource for Pompe disease patients and their families. The International Pompe Association site is full of information about the condition, patient testimonials, as well as as information about events and gatherings. For more information, please click here.
Pompe Disease: An Overview
WELLNESS & FOOD May 25, 2011
The physical signs of Pompe disease are so discreet, they may even go unnoticed. An awkward limp or waddle in a young child, especially one just learning to gain his or her balance isn’t uncommon, but persistent waddling in children such as Eric Hamlin can be one of the first signs of a severe and […]
Check out "Extraordinary Measures"
MEDICAL NEWS February 12, 2010
The movie “Extraordinary Measures” starring Harrison Ford and Brendan Fraser recounts the true story of one family’s search a treatment for Pompe Disease. Pompe Disease is a neuromuscular disorder that effects less than 10,000 people in the world. Today the lysosomal storage disorder can be treated with Myozyme. People living with Pompe disease lack the […]