Media/Key Messages National MPS Society Key Messages The National MPS Society is a leading authority on MPS and related diseases. The Society is the primary source of information on MPS diseases for parents, researchers, pharmaceutical companies, physicians and government bodies. The Society was the first support organization for MPS in the world and was formed in 1974 by a group of parents. It quickly expanded to its present level of 800 members. At least 20 similar organizations now exist in other countries around the world. The National MPS Society supports families affected by MPS and related diseases at the time of diagnosis and beyond. The Society understands that MPS diseases are lifelong afflictions that affect patients and their families from the time of diagnosis to beyond death. The Society provides valuable information for families dealing with newly diagnosed children via booklets, training, its Web site, the Courage newsletter, other published materials, personal contact and financial assistance. When a child passes away, the Society sends a white rose, along with a series of books on grief. Another rose is sent on the one-year anniversary. Family members and friends who wish to participate can submit their remembrances to Courage and a special annual publication called Angels Among Us. The National MPS Society provides a community for families affected by MPS and related diseases to share experiences. The Society believes that bringing families together to interact and share common experiences is invaluable. Each year, the Society hosts a family conference where members can interact with each other and learn about current research and legislation. In addition, the Society issues email blasts and mailings, and distributes an annual membership directory and other publications designed to encourage interaction and communication among members. Regional contact families are available for support, and members are encouraged to call the Society for information. The Society sponsors regional gatherings of members. The National MPS Society facilitates and funds research to find cures and treatments for MPS and related diseases. Recognizing that cures and treatments are not possible without ongoing research, the Society aggressively supports research efforts on a number of levels including, but not limited to, funding. The Society collaborates with pharmaceutical companies to support trials that involve MPS children, and also works closely with NIH and the LSD Research Consortium to champion research initiatives. The National MPS Society advocates for MPS and related diseases by monitoring federal legislation and providing essential input to government officials. The Society embraces its responsibility to raise awareness among members of Congress, the NIH and other government agencies about MPS diseases. The Society does not pay lobbyists, but works on a grassroots level, to meet with government officials to discuss legislation that impacts research and quality of life for MPS families. Bills are constantly researched to determine their impact and the Society's stance before communicating with legislators. The Society seeks strong membership support and involvement in legislative activities. Sample letters and membership packets to visit with Congress are available on the Society's Web site. The National MPS Society and its members raise funds to support its mission to find cures for MPS and related diseases. The Society is a member- and board-run organization, and fundraising is a top priority. The Society's Annual Walk/Runs are a primary source of research funding. These events are organized by families on a local basis with the Society providing start-up money and a 'How-To' manual when needed. Other fundraisers include an annual fund campaign, member donations and family fundraisers, such as golf tournaments, bowl-a-thons and bake sales. All proceeds raised go directly to the Society for research, family support and operational expenses. The National MPS Society raises awareness for MPS and related diseases by providing current and accurate information to members and other key audiences. Communicating timely and relevant information to increase understanding about MPS diseases is a priority for the Society. When updates are made to booklets or any other published information, members are contacted immediately via email blasts or direct mailings. Courage, Between the Issues, emails and the Web site are used to provide members with current information. The Society issues press releases to notify the public about significant events impacting MPS diseases. The National MPS Society is a non-profit organization whose mission is to find cures for MPS and related diseases, and to provide hope and support for affected individuals and their families through research, advocacy and awareness of these devastating diseases. Mucopolysaccharidoses (MPS) are genetic diseases that cause cells to perform improperly, resulting in progressive damage throughout the body. The diseases are rarely apparent at birth, but the signs and symptoms develop with age as more cells become damaged. As the damaged cells accumulate in the body, the body shuts down, eventually leading to a premature death. At this time there is no cure. Additional information is available online at http://www.mpssociety.org . 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. Since 1974 the Society has supported individuals and families affected with MPS and related diseases. We are governed by a member-elected volunteer Board of Directors, many of whom are parents of children with MPS. We benefit from the expertise of a Scientific Advisory Board, comprised of world-class physicians, researchers and medical professionals throughout the world.