Jim and Amy, along with two family members, Chris and Kristin Raydo, are running in a 5K run event on September 29th in support of a cure for our son Christian who was diagnosed with MPS Type II (Hunter Syndrome) in March 2011.
MPS II is a genetic lysosomal storage disease that affects Christian’s ability to produce specific enzymes. Normally, the body uses these enzymes to break down and recycle materials in cells. Because Christian cannot break down these cell materials, the missing or insufficient enzyme prevents the proper recycling process resulting in the storage of materials in virtually every cell of his body.
Without a cure, life expectancy is severely impacted as the storage will eventually cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system. We are very fortunate that support for research, support for families, and education exists through the National MPS Society. In the past ten years progress has been made to improve the quality of lives for children with MPS.
In May 2012, Christian began a clinical trial, in which he receives monthly infusions of a replacement enzyme into his cerebral spinal fluid with the expectation the enzyme will pass the blood brain barrier. This enzyme for his brain, combined with his weekly enzyme therapy for his body, gives a great hope for an improved quality of life.
MPS Type II is an extremely rare genetic disorder. As rare as it is, we have come to know and appreciate the support, educational materials and research for a cure provided by the National MPS Society.
The National MPS Society is a nonprofit organization that exists to find cures for MPS and related diseases. Their mission is to provide hope and support for affected individuals and their families through research, advocacy and awareness of these devastating diseases.
Thank you for supporting us in our fundraising efforts.
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The mission of the National MPS Society is to fund research and provide support for families affected by MPS and related diseases.
Please help our family and support the National MPS Society. Every donation will make a difference in the lives of those affected by MPS and related diseases. Please visit www.mpssociety.org for more information.