A New Advisory Council has been Formed for YOU!
Mission: The UMDF Adult Advisory Council Team's (AACT) mission is to ensure equal representation and service of the affected adult community to the affected pediatric community -- and to better represent, serve and assist adults with mitochondrial disease.
Purpose: To represent and serve the affected adult community and to work hand-in-hand with the UMDF on all adult-related issues. In addition, AACT will provide advice, guidance, and make recommendations to the UMDF Board of Trustees.
AACT is already aggressively reviewing current UMDF literature and web site to better serve the adult community. Other arenas in the works include, but are not limited to, developing adult specific resources from the medical community, surveying the entire UMDF membership for input (every adult has a VOICE), reviewing symposium adult programming, developing outreach and education strategies for adults to navigate in the medical community, and investigating other adult services that may prove beneficial.
"It took me over 15 years to get a diagnosis. In my eight years of involvement with the UMDF, I have yet to meet an adult or parent that has told me that they found their diagnoses within a few weeks," said Sharon Shaw. "This is why I am excited about serving on this advisory council. I have a passion to help close this gap. This council will 'AACT' by being the voice of the affected adult."
AACT serves adults (18 years of age and older) currently diagnosed with a mitochondrial disorder as well as those suspected of being affected. The council will also represent and serve the adult's support system (spouse, partner, siblings, other family members and friends). In addition, AACT will represent the interest of parent(s) of an affected child(ren).
"It is not an easy journey," Shaw said, "but it is my journey to accept. I was once this active person who worked full-time, and then one day I felt like I'd lost my identity. With the help and support of my family, the UMDF and my doctor, I will do my best. We are all given our crosses to bear in life, and I think it's about how we go about carrying that cross that makes us better people."
Contact the Council at AACT@umdf.org or 1-888-317-UMDF (8633)
Click here for adult specific information for your physician and/or refer to the recommended reading listed below.
WE WANT TO HEAR FROM YOU! In order to be more effective in serving your needs, we need YOUR input. The Mitochondrial Adult Questionnaire is an effective way of learning the needs and issues which affect our adult members. Please lend your voice by completing our online questionnaire. This questionnaire is for affected mitochondrial adults only (18 years of age and older). All information is confidential. Our survey is ongoing and we are waiting to hear from you.
Please click here to take the online survey today!
MITO 101: A Primer for Physicians and Patients is a compilation of information intended to familiarize general practitioners and families alike with the most common problems raised by mitochondrial diseases.