“I hope the world is kind to Michelle because Michelle is the kind of spirit that makes the world a better place.” The National MPS Society is making significant gains to meet the goals of our mission, but we need your help. Your gift 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
Have you received the 2014 Annual Fund letter in the mail? If you haven’t, please meet Lynn Hopkins, our Chair for the 2014 Annual Fund. Lynn and her husband, Scott, have two children, and their oldest Michelle has MPS I. Lynn and the National MPS Society hope that your family will make a difference by giving to the 2014 Annual Fund and supporting our mission to keep the Society strong:
I ask that you join our family and support the National MPS Society by donating to the 2014 Annual Fund. The Society provides a sense of community and advocates tirelessly on behalf of its members to improve the lives of families affected by MPS and related diseases.
A fighting spirit leads a family…
Michelle has hopes and dreams like every other 10 year old girl. In March, we celebrated her birthday with a Glow-in-the-Dark Disco Dance Party, every detail planned by Michelle. Although she danced with her friends for a while, she spent much of her time on the sidelines in her wheelchair. Michelle is, however, not like every other girl, because she struggles with MPS I.
My name is Lynn Hopkins. My daughter Michelle was diagnosed with MPS I at 15 months of age and immediately began receiving weekly enzyme replacement therapy. At the age of 20 months, she received a bone marrow transplant, a life-saving treatment. Our son, her three year old brother, was her donor and a perfect match.
Though our family is tremendously grateful that Michelle was given opportunities to receive treatments, signing papers with the hospital, entrusting her life with specialists and understanding the possible risk of her death shook our world. We often describe a bone marrow transplant as taking someone to the brink of death and then bringing them back to life. We learned that a transplant is not for the faint of heart.
I am able to share this story with you because of the National MPS Society. Who else does a parent talk with about making the choice to have their child endure an indescribable treatment with the hope of saving their life? Where else does a parent find someone who understands the MPS and bone marrow transplant journey? We found our answer – the National MPS Society. Their support and connections have been invaluable.
Michelle’s transplant was a success and she survived! In time, however, we learned that MPS continued to invade Michelle’s skeletal structure and other organs, and despite working diligently with physical therapists, she finally stopped going to the dance and gymnastics classes she has loved. So Michelle has now had to develop new dreams because we focus on what she can do and not what she is unable to do.
It was a wonderful moment when Michelle danced joyfully at her 10th birthday party, despite her tremendous pain. Later in the evening she confessed her body hurt so badly, but she loved watching her friends dance, even if all she could do was watch. That is our Michelle—enjoying her life in her own way, developing new dreams.
Graceful acceptance of MPS in our lives does not equal complacency. Our acceptance has come with the support of the National MPS Society. By attending conferences and speaking with board members, physicians and families, the Society gave us a road map and connections. The Society is a community that works to find a cure for MPS and supports families.
I am honored to share Michelle’s story with you and hope you are inspired to donate to the Annual Fund. Help the Society continue as a beacon of light for families nationwide. Please donate to the 2014 Annual Fund and help the Society continue to serve families.
The National MPS Society’s 2014 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.
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 firstname.lastname@example.org.