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.
Tag Archives | lysosomal storage disorder
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.
Cross-Country Walk for Fabry Disease
EVENTS May 15, 2013
Courtnay Midkiff is walking across the country to raise awareness for Fabry Disease. Fabry Disease is a rare genetic lysosomal storage disorder. To watch an interview that was recorded in Memphis, TN, please click here.
Fabry Disease Awareness Month!
EVENTS April 2, 2012
April is National Fabry Disease Awareness Month! What are you doing to raise awareness about Fabry Disease? For more information please click here.
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.
National Gaucher Foundation Online Auction
EVENTS September 12, 2011
The National Gaucher Foundation will hold an online auction October 1 through October 31. The money raised from the auction will go to support education, awareness and research of Gaucher Disease. There is a huge selection of great items to bid on to help support a good cause. Please click here for more information on […]
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 […]
Lysosomal Storage Disorders – An Overview
WELLNESS & FOOD April 1, 2011
One of the most interesting functions of the human body is the way it acts as a self-cleaning oven. One example of this concept is the process by which lysosomes act as the “recycling center” of our body’s cells, using their enzymes to break down and filter waste products and unwanted compounds. What Are Lysosomal […]
April is National Fabry Awareness Month
EVENTS April 15, 2010
The month of April is National Fabry Awareness month. You can visit the National Fabry Disease Foundation Web site and request a wristband and help raise awareness about Fabry disease. Fabry disease is a lysosomal storage disorder in which the enzyme that breaks down lipids does not work or the body is not producing enough […]