Committees If you are interested in participating on a committee or have expertise in a specific area, please consider joining a committee. We encourage all members of the Society to become active. You can contact the committee chairs directly by e-mail by clicking on the e-mail link below their name. Family Support Chairperson: Kris Klenke E-mail: kris@mpssociety.org 2006 Family Support Committee Accomplishments Awarded fourteen $1,000 Continuing Education Scholarships to support adults affected with MPS and related diseases and their siblings to further their educational goals. Awarded Conference scholarships totaling over $10,000, enabling thirteen families to attend the 2006 Family Conference Funded eleven durable medical goods grants totaling nearly $24,000. Examples of funded items include hearing aides, strollers, and adaptive equipment, C-pap machines, and vision magnification equipment. Promoted and sponsored four family initiated regional social events totaling nearly $1,500. Maintained the White Rose Program and grief booklet series for families whose child passed away during the year. Published the fourth annual Remembering Our Children memorial tribute. Hosted the inaugural CYCLE (Celebrating Your Childs Life Experience) Conferenceâ€"designed for parents and families whose child with MPS or a related disease has passed away. Fundraising Chairperson: Larry Kirch E-mail: larry@mpssociety.org 2006 Fundraising Committee Accomplishments Supported 17 walk/run events that raised $310,000 for medical research, including five new events organized by families, friends or caregivers of MPS individuals. Supported 23 family fundraising/awareness raising events, including golf tournaments, dinner events, bowl-a-thons, casual/crazy dress events, "cropping" parties, and many others. These events raised a total of $123,000 ($90,000 for research, $13,000 for family support programs, and $20,000 in unrestricted funds). Raised nearly $60,000 from our fifth Annual Fund campaign, supporting family support programs, legislative initiatives and operating needs. Obtained $16,000 in grant funding from the Employees Community Fund of Boeing California and the Daniel Molinaro Foundation for production of the MPS III Learning Guide. Obtained a $43,000 grant from the Peregrine Fund for general research. Raised $3,000 from the sale in logo items and wristbands for our family support programs. Produced a calendar with photos of individuals with MPS and related diseases as a gift to 2006 Society members. Participated in the 2006 Combined Federal Campaign for workplace giving for employees of the federal government and the military. Received a second consecutive 4-star (exceptional) rating from Charity Navigator, an independent charity evaluator. The exceptional rating assures donors that the Society manages its finances in a responsible manner, exceeding industry standards and outperforming most charities. Legislative Chairperson: Sissi Langford E-Mail: sissi@mpssociety.org 2006 Committee on Federal Legislation Accomplishments Worked with the United States Department of Education for inclusion of language for children with degenerative disorders in the regulations of Individuals with Disabilities Education Improvement Act (IDEA). Participated in the National Newborn Screening and Genetics Resource Center meeting, Issues in Pre-symptomatic Diagnosis of LSD. Secured 58 cosponsors for the House resolution supporting National MPS Day; the permanent resolution passed by unanimous consent on March 28. Worked with Senate supporters to pass the second consecutive National MPS Awareness Day with 14 cosponsors. Supported passage of the Stem Cell Research enhancement Act of 2005â€"though it was subsequently vetoed. Attended an invitation only briefing on stem cell research hosted by the Coalition for the Advancement of Medical Research (CAMR). Secured a commitment from the NIH to host the MPS 2007 scientific workshop, "Towards Clinical Progress in the Mucopolysaccharidoses". Joined the FDA Alliance whose mission is to focus national attention on the need for a strong FDA. Participated in the National Institute of Neurological Disorders and Stroke (NINDS) workshop, "Showcasing Success in Neuroscience Research." Attended the National Organization of Rare Diseases (NORD) conference on advocacy and promoting research and treatments for rare diseases. Worked with Congress for the 7th year on House and Senate Labor Health and Human Services (LHHS) report language addressing MPS research in the 2007 Appropriations bill. Education/Publicity Chairperson: Steve Holland E-Mail: steve@mpssociety.org 2006 Education/Publicity Committee Accomplishments Collaborated with three pharmaceutical companies to develop "Join the Search for Patients with MPS", an education and awareness program for physicians that includes a slide set, brochure and photo display. Gained national media attention at the launch of the Join the Search program in New York City in conjunction with the closing of the NASDAQ Stock Market trading day. Collaborated with a pharmaceutical company to develop a comprehensive MPS VI resource guide which is also available in Spanish. Added new sections to Courage newsletter reviewing recent medical literature and highlighting outstanding volunteers in the MPS cause. Developed a "members only" section on our website where members can download the Directory and past issues of Courage. Collaborated with a pharmaceutical company on an MPS I Disease Management Patient Survey. Published the fact sheets: Cardiac Problems, Caregiver Support, End of Life Issues, Palliative Care, Pamidronate Treatment in ML II/III, Port-a-Cath, and Writing a Letter of Support. Collaborated with Emory University on educational materials for MPS VI DNA testing. Began the update process for each of the syndrome booklets.