In February 1974, a group of about ten people, all of whom had children with MPS and ML, gathered in a conference room at the Johns Hopkins Hospital. The goal was to learn more about these disorders and form supportive relationships within the group. From that meeting came the decision to form an organization for all families with MPSandrelated diseasescalled “Parents for MPS”.
Plans were made to become incorporated and apply for tax-exempt status. Publishing a newsletter to share and provide information become a priority, and the fundraising projects soon followed. The organization realized the need to expand existing research and to promote new research.
The initial $5 membership fee to offset the cost of publishing and mailing our newsletter was increased in 1978 to $10. In 1990 the membership categories increased to include professional members and families living outside the US.
At the June 1974 meeting, officers were elected to a temporary board, and the name changed to “The MPS Society”. The Board set up a Parents Referral Plan (PRP) to put families in contact with other families to discuss their mutual concerns. The Board began learning the complex medical information about these disorders in order to better inform the members of the organization. By May 1976 the organization boasted a membership of 34 families.
September 1975 was a milestone for the MPS Society with the organization becoming incorporated and holding the first seminar, attended by 33 people. The next year form 1023 was filed for tax-exempt status, and an election was held with a new Board of Directors elected. By 1979 the membership increased to 150, with a mailing list of 250.
Tax-exempt status was granted in 1986 shortly after the name of the newsletter was changed to Courage. By 1995 the membership had grown to the level it is today, and a category was added for adults with MPS. Through research donations, fellowships were awarded with the help of the Scientific Advisory Board. Syndrome information booklets were published plus a booklet on anesthesia and “Ethan’s Feeling Switch”.
In 2009 the Society celebrated our 35th anniversary. The accomplishmentsbetween 2000-2004 were considerable. In 2000 our 5k walk/runs began with 7 events bringing in $100,000. In 2009 we raised over $285,000 from 21 events. Ten years later and thishas corresponded with over $3.5 million awarded for research grants since 2001. In April 2003 the first enzyme replacement therapy(ERT) for an MPS disease was approved by the FDA, Aldurazyme for MPS I. Naglazyme, the ERT for MPS VI was approved in 2005, and in 2006 the FDA approvedElaprase, ERT for MPSII. Getting the enzyme into the brain is the next step, and clinical trials are in progress in MPS I and MPS II with protocols being written for these studies in MPS II and MPS III.
Our Family Support program includes such programs asyearly funding for regional social events, conference scholarships, the Family Assistance Program, Exceptional Experiences, andeducation scholarhips.The CYCLE program (Celebrating Your Child’s Life Experiences) acknowledges the families whose loved one has passed on from MPS. CYCLE conferences are held for the bereaved parents. Our website is now our primary communication vehicle for the public and for our members, and we have over 9000 supporters in our database. In addition to our syndrome booklets, we have specialized booklets on Management, Education, and Anesthesia. We continually add to ourseries of fact sheets. In 2006, we partnered with the Canadian MPS Society to publish an educational booklet titled “Daily Living with MPS and Related Diseases”. Our yearly conferences continue to remain a great source of practical knowledge and emotional strength. International MPS Day, May 15th, is the day to remember all the children and adults who currently suffer from MPS and related diseases and those whose struggle has ended.
Through the Legislative Advocacy committee, we work with Congress to express our concerns to government agencies, such as the National Institutes of Health, Department of Education and the FDA. Legislative advocacy efforts has increased research funding from NIH for MPS and related diseases. Funding has increased from $5.9 million in 1997 to $9.3 million in 2004.
We are partnering with other lysosomal storage disease (LSD) support groups to offer research grants for treatment of the central nervous system. This partnership also focuses on education and increased awareness of these diseases. Both nationally and internationally, researchers, scientists and LSD support groups are joining together in the common goal of finding cures for these diseases.
The advances in recent years from a grassroots organization could not have happened without the tremendous support of our members, our families and friends, our Scientific Advisory Board, and, in recent years, our friends in the pharmaceutical companies. A special thank you to each of you. Each year we are closer to achieving the goals of our mission statement:
The National MPS Society exists to find cures for MPS and related diseases. We provide hope and support for affected individuals and their families through research, advocacy, and awareness of these devastating diseases.