BENEFITING: National Niemann-Pick Disease Foundation (NNPDF)
ORGANIZER: THE IRONMAN FOUNDATION
EVENT: YOUR JOURNEY, YOUR CAUSE
After 18 triathlon seasons, 100+ races (15 at IRONMAN distance), I have finally gotten a Kona slot. My journey to this point has been an investment of time and effort. Happily, my wife and family have been supportive. More than just being supportive, Anne is also involved. She often trains and races with me.
In addition to the normal conflicts, pressures & difficulties encountered in training and racing, Anne has to deal with her genetic disorder, Niemann-Pick Disease (NPD Type B). NPD is a lysosomal storage disease. It is caused by a failure to produce the enzyme that breaks down aged cells. These waste cells are stored in the spleen, liver, lungs and heart. Anne has symptoms that make her life a challenge. In Anne’s case, she has been able to deal with the symptoms of this disease and continue a fairly normal life. Other affected people have varying degrees of health issues. Those with NPD Type A do not create any of the enzymes. They do not develop properly and live short lives, dying at 2 or 3 years of age. There is currently no treatment and no cure.
The National NPD Foundation (NNPDF) does great work supporting NPD research and providing NPD affected families with information, comfort and support. The NNPDF promotes the slogan: “Persevere” to give strength and hope to those with NPD and their families. Through all these triathlon seasons, the training for the races and the race itself, I persevere.
You can learn more about the NNPDF at www.nnpdf.org
Thank you for supporting the NNPDF and the work they do.