In one of my earlier blog posts, I announced that Matt and I would be running a Half Marathon (13.2 miles) as we celebrate Taylor’s 13 wonderful years of life. Taylor, our daughter with MPS, was given the average life span of 10-15 years for her disease and so we are thrilled that God has blessed us richly over the last 13 years.

We have been members of the National MPS Society for seven years and appreciate their work for the cause of MPS. The National MPS Society exists to find cures for MPS and related diseases. The society provides hope and support for affected individuals and their families through research, advocacy and awareness of these devastating diseases. Our family has personally witnessed the support of the society through medical education scholarships, medical equipment funding assistance, and conference scholarships. Matt and I were issued the “Director’s Award” from the Society in Dec. 2009 for our work in the area of family support for the last seven years.

Where do you come in?

  1. We need you to link this post on your facebook and twitter accounts to raise awareness for MPS. MPS is in the same family of diseases (lysosomal storage disorders) as the disease (Pompe) in the recent movie “Extraordinary Measures.
  2. To support us in this half marathon fund-raising event, please click here for the MPS Society secure online donation site. In the special comment field, type “13 years in 13 miles.”
  3. If you prefer to write a check, please make it out to the National MPS Society. You can mail it to: National MPS Society, PO Box 14686 Durham, NC 27709 or personally deliver it to us to forward on to the society.
Thank you in advance! The race is April 24, 2010 in Nashville, TN. Click here for the previous blog post with initial information.