Give to the Annual Fund: Chair Kim Whitecotton

The National MPS Society is making significant gains to meet the goals of our mission, but we need your help.  Your donation to our Annual Fund helps move our Mission forward in finding therapies and cures for children who need them and supporting our families.  Your support allows us to continue these critical programs:


  • Legislative Advocacy to improve services to families and to increase money for research
  • Family Support with conference scholarships, continuing education scholarships, durable medical equipment
  • Bereavement programs to support families with desperately needed resources
  • Informational resources for the public, the medical community, and the families
  • Parent to parent support, to serve the daily needs of the families

Kim Whitecotton along with her mother Lennie Forkas are Co-Chairs for the 2012 Annual Fund.  Kim is also a Board Member, Mother to Scotty, MPS II and sister to Russell who passed away from MPS II. She is honored to be the chair and we are honored to share her story with you.  Kim, Lennie and the National MPS Society hope that your family will make a difference by making a donation to the 2012 Annual Fund and support our mission and keep the Society strong.

They state,

A mother shares her journey…

My name is Kim Whitecotton and my family joined the National MPS Society eight years ago—but our family has lived in the world of MPS for 45 years. MPS has been causing my family pain since 1966 when my brother Russell was diagnosed.  Although I was younger than Russell, I have some wonderful and vivid memories of him as a happy little boy.  However, I also remember watching the disease slowly take his life, passing at the age of 12.

In 1984 I married my wonderful husband, Tom, and 13 years later we started our family, welcoming our beautiful son Scotty, now 15. We now felt complete and living the American dream. However soon after Scotty was born, we noticed a bump along his spine. This eventually led to the saddest day of our lives, when we were given his diagnosis—severe MPS II.  Yes, this devastating disease had been passed from one generation to the next.

As Society members we quickly became aware of the considerable support provided to families through family support, legislative and research efforts. We learned we had an array of educational tools available to guide us and emotional support provided through conferences and family gatherings.

The Annual Fund provides programs for families struggling with MPS and related diseases. I am honored to work with the National MPS Society this year and ask for your support in the Annual Fund. Your donation will ensure the continuance of these critical programs and families will receive the help they desperately need and deserve.

When my brother Russell was diagnosed, we did not know his specific diagnosis of MPS II and that the gene can be passed from mother to daughter.  Now, each day, we acknowledge the disease in our son. We cherish every day we have with Scotty. He is our greatest joy.  He is also a joy to my mother who wanted to share the following words with you.

A mother and grandmother’s plea…

“Years ago we did not have hope for Russell as no medical treatments were available. Today my grandson Scotty suffers severely from MPS II. Though Scotty receives treatments that did not exist for Russell, it still is not a cure. Our family wants to stop this disease passing from one generation to the next. Our hope is for you to join us by giving to the National MPS Society. In addition to funding research, the Society remains committed to their mission of supporting families through family support programs and legislative efforts.”

Please help our families and donate to the 2012 Annual Fund.  Support an amazing mission. In memory of my son Russell and in honor of my grandson Scotty your gift will keep the National MPS Society strong.

Thank you from the bottom of our hearts,


The National MPS Society’s 2012 Annual Fund program is focused on three general areas; (1) where needed most (2) legislative activities and (3) family assistance.  By improving the Society’s capabilities and effectiveness, the two programmatic areas of legislative and family assistance will be strengthened.  The Annual Fund program provides donors the opportunity to give a gift in any of these three areas.
By building the capacity of the Society, proceeds from the Annual Fund raise public awareness, improve advocacy, strengthen the leadership and overall effectiveness of the organization, and expand the Society’s leadership role in public policy formation.

You can make a donation online here.

Or make a check payable to: National MPS Society and send to

National MPS Society
Attn: Annual Fund
P.O. Box 14686
Durham, NC 27709

For more information contact Terri Klein at 919-806-0101 or

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