A Special Message from the UMDF Adult Advisory Council Team (AACT)…
During this very difficult time for all of us, please remind yourself of the following:
Control what you can control, take it day-by-day, and we will get through this together.
On behalf of AACT, we would like to share some helpful tips to assist you physically, emotionally, spiritually and situationally during this trying time.
Please see the Adult Corner Page for additional tips.
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 whom will assess and evaluate, provide advice and guidance, and make recommendations to UMDF on all adult related issues and/or needs.
For UMDF to have parity between the affected adult community and the affected pediatric community to ensure equal representation and service to the affected adult population, and to provide better service, support and assistance to adults with mitochondrial disease.
• 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).
Established in 2006, the purpose of AACT is to represent, serve and support the unique needs of the affected adult mitochondrial community and to ensure that those needs are adequately represented to UMDF resulting in enhanced services to the affected adult population. ACCT does not work independently but in conjunction with UMDF to provide advice, guidance and make recommendations working with and through UMDF.
The following five arenas were identified and created by AACT as our primary areas of special interest and focus. Under each arena we have listed objectives but AACT is not limiting itself as we continue to work hand-in-hand with UMDF to better understand the many facets and unique needs of the affected adult mitochondrial community and its support system.
Arena #1: Collateral & Communication
- To assess and recommend any changes, updates and/or revisions need to be made to UMDF collateral with respect to the word adult(s), their unique issues, their stories, and to put more adult and young adult faces in the forefront or equal to a child(ren).
- Evaluate the need to develop new materials.
- Raise awareness about the adult and young adult mitochondrial population through their personal stories and photos.
Arena #2: Website, Internet & Social Media
- Effective use of the AACT website as a means of education and communication between UMDF, AACT, and the adult and young adult mitochondrial community.
- Effective use of social media.
- To host special educational webinars.
Arena #3: Outreach & Education
- To provide adult resources to help adults and young adults navigate in the medical world.
- To provide institutions and physicians that diagnose, treat and support the affected adult and young adult mitochondrial population (per request.)
- Continue to educate the mitochondrial community, the public, and the medical community.
- In conjunction with UMDF, oversee any-and-all adult and young adult related issues and/or needs.
Arena #4: UMDF Mitochondrial Medicine Symposium
- *Assess and make recommendations to ensure adequate number of adult and young adult sessions.
- Create networking and social opportunities for adults and young adults.
- To provide and share information of special interest, resources, news and updates.
- Assist UMDF at Regional Symposiums.
Arena #5: Development of New Materials & Adult Mitochondrial Community
- Evaluate the need to develop new materials on behalf of the adult and young adult mitochondrial community.
- Continue to assist UMDF in developing a comprehensive adult and young adult database, patient registries and library.
- Continue to be an advocate on behalf of the affected adult mitochondrial community.
- Joy Krumdiack, AACT Co-Chair, Washington
- Gail Wehling, AACT Co-Chair, Illinois
- Devin Shuman, AACT Young Adult Chair, Nevada
- Mia Bell, Adelaide, Australia
- Kailey Danks, Toronto, Canada
- Whit Davis, North Carolina
- Debra Fox, Arizona
- Rev. David Hamm, Maryland
- Christy Koury, North Carolina
- Terry Livingston, Florida
- David McNees, Ohio
- Linda Ramsey, New York
- Sharon Shaw, Arizona
- Jennifer Schwartzott, New York
- Gregory Yellen, Maryland