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UMDF, Adult Advisory Council Team

Discussion in 'Action Alerts and Advocacy' started by *GG*, Mar 9, 2011.

  1. *GG*

    *GG* senior member

    Concord, NH
    Patients who suffer from mitochondrial disease as adults are faced with many different challenges. Many times they need to balance their health problems alongside their employment, relationships and caretaking needs.

    Whether you are an adult patient, a caregiver of an adult patient or someone seeking to learn more about mitochondrial disease as it pertains to the adult population - we encourage you to explore the many resources that are within our AACT pages.

    Adult Advisory Council Team

    AACT Mission Statement: For the UMDF to have parity between the affected adult community and the affected pediatric community and to better represent, serve and assist adults with mitochondrial disease.

    Purpose of AACT: To represent and serve the unique needs of the affected adult community and to ensure that those needs are adequately represented to UMDF resulting in enhanced services to the affected adult population. AACT is a liaison to the UMDF Board of Trustees and will assess, provide advice and guidance, and make recommendations to UMDF on adult related issues.

    Who AACT Serves:
    Adults with Mitochondrial disease (18 years of age and older).
    Adults suspected of having Mitochondrial disease (18 years of age and older).
    Adults Support System: Spouse; Partner; Siblings; Other Family Members; Friends.
    Affected Adults with affected child(ren) and parent(s) with affected child(ren).

    The Team: Medical Advisors:
    Sharon Shaw, AACT Chair, Arizona Bruce H. Cohen, MD, Cleveland Clinic Foundation
    Gail Wehling, AACT Co-Chair, Illinois Amy Goldstein, MD, Children's Hospital of Pittsburgh
    Bob Brieff, New York
    Marge Calabrese, Arizona
    Linda Cooper, California
    Rev. David Hamm, Maryland
    Etan Harmelech, Connecticut Young Adult Subcommittee
    Pam Johnson, MD, Missouri/Kansas
    Deb Makowski, New York Adult Liaison Coordinator West Coast
    Beate Pohlig, Pennsylvania Adult Liaison Coordinator East Coast
    Erica Schwartz, Connecticut Young Adult Subcommittee
    Gregory Yellen, Maryland

    AACT identified and created the following 5 Arenas of Special Interest and Focus. AACT does not work independently from the UMDF but rather researches then makes recommendations working with and through the UMDF. AACT is not limited to these arenas as we continue to assess, research and work with the UMDF to better understand the unique needs of the adult mitochondrial patient/population and its support system. Under each arena we have listed a few objectives; it is not possible to list all of them.

    Arena # 1: Awareness, Marketing, Communication Collateral

    *Audit current UMDF collateral to determine and note if any changes or updates are needed with respect to equity and representing the adult mitochondrial patient/population.

    *Evaluate the need for new materials. *Create databank of adult photos and stories for use in media and throughout UMDF outreach. *Continue working with UMDF and Chapter Memberships looking at how adults are being represented.

    Arena # 2: Website & Internet
    *List on-going resources, information, news and updates via AACT pages on the UMDF website as a means of communication and education to the adult mitochondrial patient/population.

    Arena # 3: UMDF Symposium

    *Make recommendations to define adult needs at the Symposium. *Create networking opportunities for adults at the Symposium. *To provide information and resources, news and updates.

    Arena # 4: Outreach & Education: Adults & Medical Community
    *To raise awareness to physicians about adult mitochondrial patients. *Identify institutions and physicians that can diagnose, treat and support the diagnosed adult mitochondrial patient/population.

    *Reach out to and educate both the medical community and adults with this disease.
    *Develop an Adult Mitochondrial Resource Guide to help adults navigate in the medical world. *Continue to develop a comprehensive adult database. *Create a UMDF Adult Liaison National Network and Young Adult National Network that will connect adults through their existing UMDF Chapters and Groups and will also provide important and useful information and news.

    Arena # 5: Development of New Materials
    *Evaluate the need for new materials. *Organize and catalog all newly developed collateral that has been created for the adult mitochondrial patient/population. *Continue to develop a comprehensive adult library.

    Contact the Council at or 888-317-8633 begin_of_the_skype_highlighting 888-317-8633
  2. *GG*

    *GG* senior member

    Concord, NH
    Thought this posting might provide for some ideas in regards to advocacy?


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