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!

AACT Adult Questionnaire Highlights

At present, over 200 adults have responded to the Adult Advisory Council Team’s (AACT) Adult Questionnaire! Respondents range in age from 18-69, and from as far away as China and New Zealand (although the majority are from the United States.) Of those that reported having children, approximately 45% of their offspring are affected by mitochondrial disease. And, approximately 35% of affected adult’s siblings are affected as well. Approximately 14% reported that they are active with their local UMDF Chapter or Group.

Results from the Questionnaire clearly show that most adults who suffer from some form of mitochondrial disease have unmet needs in regard to their illness; thus this strongly confirms and supports the creation and work of AACT.

Major reoccurring themes from the Questionnaire:

• Concern over the lack of Medical Practitioners who are knowledgeable about adult forms of mitochondrial disease. Many respondents expressed considerable frustration over this serious limitation in the current medical system.
• Worries and concerns over managing the many different disease related symptoms. Corresponding requests for development of a variety of resource materials or “how to” guides that address some of these problems.
• A strong desire to raise public awareness about mitochondrial disease in the medical community, the general public, including other family members, and particularly among Federal and State agencies and private organizations involved with providing financial assistance, e.g., Social Security, Health Insurance Companies, etc.
• Illness related financial concerns; applying for disability assistance, health insurance coverage for medications and other disease related financial problems.
• A need to connect with others (Support & Networking) for purposes of learning, coping and support. Relatively few adults are involved with support systems of any kind, however, the desire for and anticipated benefits of such involvement are frequently mentioned.

The areas AACT has chosen to concentrate its efforts are ones frequently mentioned by Questionnaire respondents. In addition, areas of concern (see above): medical care and symptom management, disease related financial issues and facilitating involvement in support situations are ones AACT is aware of and is focusing its attention as well. With respect to AACT, the council is focusing on a number of important areas of special interest (see below).

To date from Questionnaire respondents; here is their order of priorities:

• Medical Community: Development of adult physician & services resource guide
• Outreach & Education: To affected adults and medical community
• Website & Internet: Obtain information, updates & news for affected adults
• Educational/Informational Print Materials: Updating & development of new adult materials
• Media & Public Relations: National & local adult stories and awareness about mitochondrial disease and The United Mitochondrial Disease Foundation
• UMDF International Symposium: Adult sessions & adult gathering (social/meet adults)

A number of adults appeared genuinely interested in getting involved with helping others and in engaging in some type of self help or support network. AACT is currently addressing and facilitating these efforts.

It is apparent that the Questionnaire also functioned as an important means of communication for adults as much as an important information gathering for AACT. Because of this, AACT is currently working on better and easier avenues for adults to communicate with AACT and/or UMDF.

In conclusion, there appears to be a consistency between the “Yes or No” responses and the descriptive portions of the Questionnaire. The former questions showed what only could be described as a limited level of involvement with various support services. Comments in response to the open-ended questions support the idea that adults could use much more help in coping with their own and, at times, family member’s mitochondrial disease. It should also be noted that a number of adults are not involved with a local UMDF Chapter or Group because there is not any close enough to be accessible. AACT and UMDF are aware of this and are currently working on better access and connections with adults and their local Chapter or Group.

The AACT Adult Questionnaire has been of great help and assistance to AACT and UMDF. Please be aware that all Questionnaire comments, ideas and/or suggestions are taken into consideration as AACT endeavors to meet the needs of the adult mitochondrial community. For AACT news and updates, including more information on many of the above mentioned topics and issues, please visit umdf.org and click on “For Adults.”

Thank you again for your participation.

Yours in service,
Adult Advisory Council Team (AACT)