Advocacy Working Group Recommendations

1. Members: Pam Bower, Larry Kellerman, Judy Biedenharn, Philip Fortier, Carol Langer, Cyndi Roemer, Lily Shih, Sharon Sutton Advocacy Working Group Recommendations

2. Recommendation One Recommendation: Increase knowledge about MSA among medical professionals by developing a continuing education program that emphasizes patient-centered care. Develop accredited MSA centers of excellence to serve as models. Need: The needs of MSA patients are not adequately recognized by health professionals and thus patients are underserved. Pathway: • Work with all stakeholders to develop the "gold standard of care" for MSA patients (http://datamsa.com/). • Collaborate with MSA organizations to develop criteria for accreditation of MSA centers of excellence. • Develop and fund a comprehensive MSA medical education program drawing on a variety of modalities including CME workshops, conferences, rounds, fellowships, media, etc.

3. Recommendation Two Recommendation: Initiate a funded liaison who works with stakeholders to access funds, cultivate the development of innovative technologies, and nurture collaborative research programs. Need: Presently, stakeholders are working independently thus limiting access to sufficient funds that support the development of vital research and assistive technologies. Coordination of efforts will facilitate progress. Pathway: • Identify stakeholders. • Create a jointly funded liaison position to coordinate stakeholders in accordance with professional standards and subject to ethical guidelines. • Develop dedicated MSA fundraising activities supported by and benefitting collaborating MSA partners. • Develop dynamic review process to ensure timely and accurate reports.

4. Recommendation Three Recommendation: Institute a public information structure to develop and disseminate information tailored for advocacy and awareness. Need: The disparity in quality resources presently available requires a structure to ensure professional materials are consistently available to medical professionals as well as the public. Pathway: • Institute a network of professional contributors. • Develop a clearinghouse of materials dispensed through multiple modalities. • Facilitate a pathway for greater involvement for those expressing interest. • Implement a survey program to assess efficacy of materials.

5. Recommendation Four Recommendation: Develop a dynamic and collaborative network of partnerships among relevant organizations that will strengthen advocacy, raise awareness, support patient responsive research and government action. Need: Currently, advocacy activities among rare neurodegenerative disease organizations are disconnected. A unified strategy will strengthen the efforts of all. Pathway: • Implement a data mining program to spur patient responsive research activities and facilitate communication and accessibility. • Establish collaborative efforts with other organizations to raise awareness, strengthen advocacy and patient responsive research. • Ensure a dynamic network through implementation of an annual review program. • Encourage and support unified awareness activities (such as the MSA Shoe).