4th Annual
Shots For Sean Memorial Golf Tournament
Thursday, August 2, 2012- 9:00 AM Palmer, Alaska
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National MPS Society - How to Save a Child
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Sean Dummann was the son of Ernie and Debbie Dummann. Sean was diagnosed with MPS, a rare disease at the age of 16. The average life span age for those suffering with MPS is 13 to 14 years old. Sean was very lucky to celebrate his 30th birthday before dying from the diseases in 2010. Because Sean and others like him are missing a critical enzyme, they have severe neurological damage and require 24 hour specialized care. There is currently is no cure for MPS. Research in the field of MPS is promising and is the key to finding cures and effective treatments.
What is MPS?
Mucopolysaccharidoses (MPS) and related diseases rare genetic lysosomal storage diseases (LSD). They are also referred to as metabolic diseases in which a critical enzyme is missing. By having these missing enzymes, the cells in the body cannot break down naturally and cause a type of storage which then damages these cells causing irreversible damage throughout the body.
What are the Major Characteristics of MPS Diseases?
While the effects of the disease vary from individual to individual, some or all of the following conditions may occur: short stature, mental retardation, clouding corneas, stiff joints, speech and hearing impairment, respiratory issues, hernia, heart disease, hyperactivity, digestive disorders, and most importantly, a shortened life span averaging 13-14 years.
Promising Research and Therapies:
There is hope that future generations of MPS and related disease children will not have to suffer from these devastating disorders. With National Institutes of Health funding dramatically reduced in the last few years by 30 percent, we need to help Sean and his peers by doing private fundraising. This is where you come in because:
The National MPS Society exists to find cures for MPS and related diseases. They provide hope and support for affected individuals and their families through research, advocacy and awareness of these devastating diseases. The Society is a 501(c)3 Nonprofit, federal tax # 11-2734849. For more information about MPS and the National MPS Society go to: www.mpssociety.org
*Note: Under IRS Regulations, only $65 of the golf outing fee can be considered a tax deductible donation.
With your help, the Dummann family, friends and supporters have raised over $65,000 for the National MPS Society Medical Research Program. Please help other Alaskans affected by this devastating storage disease. With your support, WE WILL FIND A CURE.
STILL LOOKING FOR A CURE!
Thank you all so much for your love, support and commitment?
Ernie, Debbie, Trent, Amy and Opal Dummann
