Sissi Langford's Personal Statement  Reasons for running for the Board:  I ran for the BOD as I learned more about the impact parents can make on national  public policy affecting children with rare diseases. I was inspired by other dedicated  board members to become a part of this organization. I continue to be inspired by our  families and my own children. Committees and board responsibilities: In January 2001 I started working as a volunteer on the Committee on Federal Legislation researching relevant legislation and National  Institutes of Health (NIH) information, writing letters to legislators, participating in preparation for advocacy on Capitol Hill and learning the legislative process. Eventually I worked with this committee to advance our goals to establish a broad base of congressional contacts interested in working with us on public policy affecting MPS related research, quality of life issues, special education and therapy improvements, medical research funding and legislation supporting the rare disease community. We also work to  increase federal investment in MPS research, increase the focus on these disorders at the NIH, and to advance the recommendations of our Scientific Advisory Board (SAB) to improve understanding of these disorders at the NIH and on Capitol Hill.  In January 2004 I was promoted to Chair of the Committee on Federal Legislation, and started  my second two year term and continued to serve.  I also serve as Director at Large of our  Executive Committee.  Society fundraising activities: Organized Joe and Maggie’s Walk for MPS in 2001 and 2002, raising over $60,000.  Raised over $6000 and attended Maddy’s RTP Walk  in 2005 Personal interests, hobbies: I am in the process of developing a walking program for Hospice and other disability parents  to network, attend healthy educational workshops and to find stress relief as caregivers of  chronically ill children. I like to listen to local music and spend time at the beach. Family: I am married and have three children, two (Joe and Maggie) are affected with MPSIII.  Education and Professional: I work as a self employed residential coastal home designer in Charleston and surrounding coastal areas. I work with clients to design homes. I  provide complete working drawings to be used for construction. Community and volunteer activities: I serve on the South Carolina State Advisory Council on the Education of Individuals with Disabilities as a parent of children with a disability. This is an appointed position to advocate for all students and others involved with special education, review current education programs and recommend courses of action to the state. I serve on the BOD of The Family Resource Center which provides many services for the disability community including the Parent Training and Resource Center. I have worked with parents of school age children with disabilities as a Peer Parent Mentor to educate parents on available resources to learn the special education laws and to teach parents to advocate for their children in the school setting. Personal impact of being on the board, goals you hope to achieve: Being on this BOD has been one of the most important elements of dealing with MPS.  I hope to continue to work with Congress, government agencies and our membership to  move these diseases and the MPS Society forward and to bring about awareness to the  people who have the ability and the resources to seek cures.