Give to the 2013 Annual Fund: Chair, Stacy Peters

Stacy and Erin Peters Annual Fund picThe 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.  Along with support for our operations, your donation allows us to continue to fund 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

Stacy Peters, mother to Erin with MPS III B is the 2013 chairperson for the Annual Fund.  Stacy has also been a long time Walk/Run host in her state of Georgia. She is honored to be the chair and we are honored to share her story with you.  Stacy and the National MPS Society hope that your family will make a difference by making a donation to the 2013 Annual Fund and support our mission and keep the Society strong.

She states,

A family accepts the journey and builds a legacy…

Erin will celebrate her 24th birthday this summer, a milestone—without a doubt—because she has MPS IIIB.  Although she is our first born, Erin is now our baby.  Her younger brother and sister now function in the role of “big” brother and sister and have accepted this role with grace and love.

My name is Stacy Peters, and my family has been members of the National MPS Society for
17 years. When Erin was first diagnosed, we thought there was nowhere to turn, but we were mistaken. We quickly learned about the Society, their membership and the passion behind their mission to support families. Our membership has been invaluable. It allows us to navigate the murky waters of life with MPS by providing answers to difficult questions and bringing us closer to other families around the country.

Over the years, we have been frustrated because there has been no treatment for Erin, who desperately needs one, and saddened for friends who have lost their loved ones to MPS and related diseases.  As a family, we have learned to be patient while research developed. This was not always easy. While waiting, we gained strength by giving back, by doing our part to lessen the wait for a treatment for Erin and others. For 13 years, our family has hosted an MPS run.

The benefits we’ve received from hosting our run are so much more than the dollar amount.  Everyone in our community knows Erin—she’s famous!  Our community is aware of MPS!  Erin may not live the life we dreamed for her, but she lives a life filled with riches from the love and support of her family and community.

We know not everyone can host a run for 13 years, but everyone—this means YOU—can give to the Annual Fund.  The Annual Fund supports families and individuals suffering from MPS and related diseases, strengthens our educational resources and advocates in Congress and at the NIH for increased research funding.

We’ve met so many MPS families on our journey and listened to their stories.  They also have benefited from the Society’s many Family Assistance Programs and then found a way to support the Society through raising awareness or raising funds.  I guess it’s that pay-it-forward philosophy.

Today, we move forward stronger and with more hope than ever before as research leads our family to participate in the first National History Study for MPS IIIB.  We know that the Society is an integral part of this critical step towards a future treatment for Erin’s disease.

As a fundraiser for 13 years, I’ve learned that if you don’t ask, people often do not know what you need.  The Society has a need, a need to continue serving families.  I’m asking you to please fulfill that need and give today.

I am honored to share Erin and our family story with you. Our family has been inspired to make a difference and build a legacy for Erin through our annual run. YOU can make a difference and send a donation to the Annual Fund.  Pay it forward!  Navigating the MPS waters without the National MPS Society is unimaginable!

Click here to view this letter.


The National MPS Society’s 2013 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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