While doing Ironman Arizona in 2013, I had the privilege of raising awareness and funds for a rare hereditary disorder known as MPS. Once again, through the Ironman Foundation/Crowdrise, I have the good fortune of being able to further support the National MPS Society and those who have been afflicted by this disease.
I had never heard of MPS until mid 2013 when a fellow co-worker told me he lost two siblings to the disease. MPS — short for mucopolysaccharidoses — is actually a group of disorders, all of which are characterized by the body’s inability to produce specific enzymes. The lack of these enzymes prevents the body from breaking down sugar carbohydrate chains, resulting in excess storage of materials in virtually every cell of the body. The effects are devastating, resulting in mental retardation, shortened stature, vision and hearing problems, lifelong pain, heart disease and other chronic conditions. Most people with MPS don’t live past their late teens or early twenties.
Just one in 25,000 people are born with MPS. One of them is Anni Motsinger, a 7 year-old girl who was diagnosed with a form of the disorder called Sanfillipo syndrome in 2011. Rare diseases like these get scant research funding. We need increase awareness and support for research in order to improve Anni’s hope for a better quality of life and a longer future. Please check out the donation page and make a donation. The following is a quote from Anni’s mom Morgan, “I'm asking that you donate $11.14. Why the weird amount? Anni was diagnosed on 11/14, so I'm claiming those numbers for something awesome! Jeff is doing the Ironman competition in September and proceeds of his fundraising efforts go to the MPS Society to help further research and support for MPS families. If you can donate more, please do”.
Ironman Lake Tahoe 2015 is on Sept. 20. My training is already in full swing and I invite your support of the MPS Society. Any amount is appreciated. Thank you for your time and generosity to bring hope to the children & families afflicted with MPS.
I choose to train and compete. The families with MPS did not choose their circumstances, but their determination and perseverance to face the daily challenges of MPS is truly inspiring.
To find out more about MPS, copy and paste the following link in your browser.
Additionally, the following is a link to the story of Anni Motsinger and her family who have been affected by MPS. Please copy and paste link in your browser for more information about their story.
Thank you for your consideration in making a donation to help further research and awareness of this rare disease.