Meet the Adult Advisory Council Team (AACT) -
Representing, Serving, and Supporting Affected Adults
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My name is Sharon Shaw, and I live in Arizona. I was diagnosed with Kearns Sayre Syndrome 11 years ago. I have been involved with UMDF since my diagnosis serving on the Board of Trustees as Vice-Chairman and as Chairman of the Adult Advisory Council Team.
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My name is Gail Wehling, and I live in Illinois. I was diagnosed over 30 years ago with CPEO (Chronic Progressive External Ophthalmoplegia) a form of Kearns Sayre Syndrome. I have been involved with UMDF for over 10 years serving on the Chicago Chapter Board and as Co-Chairman of the Adult Advisory Council Team.
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My name is Bob Brieff, and I live in New York. I was diagnosed with Mitochondrial Myopathy over 10 years ago. I have served on the Adult Advisory Council Team since it was established in 2007.
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My name is Linda Cooper, and I live in So. California. My 17 year old son, Chad, is affected. I have been a UMDF volunteer for 13 years. I currently serve on the UMDF Board of Trustees, the California Chapter Board, and the Adult Advisory Council Team.
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Whit Davis lives in Pennsylvania. He was diagnosed with Kearns Sayre Syndrome in 1981. He joined the Adult Advisory Council Team in 2011.
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My name is Rev. David Hamm, and I live in Maryland. I was diagnosed with MELAS (Mitochondrial Myopathy, Encephalopathy, Lactic Acidosis, Stroke) in 2005. I have been a member of the Adult Advisory Council Team since April 2007.
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Our names are Erica and Etan Harmelech, and we live in Connecticut. Erica was diagnosed in 2004 with Complex One Mitochondrial Myopathy. As a young adult with mito and a spouse of someone with mito, we have taken an interest in helping young adults and their families deal with the unique challenges that come along with being affected with mito during those transitional
years.
They formed and oversee the Adult Advisory
Council Team Young Adult Group Committee.
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My name is Pam Johnson, and I live in Kansas. My diagnosis is clinical at this point, although I continue to seek a laboratory confirmation. I have been involved with UMDF through the Kansas City Support Group for 11 years.
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My name is Debra Makowski, and I live in Arizona. I was diagnosed with Mitochondrial Myopathy in 2008 after numerous lifelong misdiagnoses. I have served on the Adult Advisory Council Team as the Adult Liaison Coordinator since 2009.
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Gregory Yellen is also a member of the Adult Advisory Council Team. A photos of him is not available at the time.
Gregory Yellen lives in Maryland. He was diagnosed with Kearns Sayre Syndrome in 1989 and has been learning about mitochondrial disease ever since then. He became involved with the Adult Advisory Council Team in 2007.
Adult Advisory Council Team
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.
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 and evaluate, 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).
- Adult’s Support System: Spouse; Partner; Siblings; Other Family Members; Friends.
- Affected Adults with affected child(ren) and parent(s) with affected child(ren).
The Team:
Sharon Shaw, AACT Chair, Arizona
Gail Wehling, AACT Co-Chair, Illinois
Bob Brieff, New York
Linda Cooper, California
Whit Davis, Pennsylvania
Rev. David Hamm, Maryland
Erica Harmelech, Connecticut – Young Adult Committee
Etan Harmelech, Connecticut – Young Adult Committee
Pam Johnson, MD, Missouri/Kansas
Deb Makowski, Arizona – National Adult Liaison Coordinator
Gregory Yellen, Maryland
Medical Advisors:
Bruce H. Cohen, MD, Children's Hospital Medical Center of Akron
Amy Goldstein, MD, Children's Hospital of Pittsburgh
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 AACT@umdf.org or 888-317-8633
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