MitoAction
MitoAction News!
August 2007
in this issue
:: Understanding Mito
:: Opportunities
:: General Meeting Friday @ noon
:: Red Sox!
Awareness logo Greetings friends!
This month, many of you are thinking about the last vacation of the summer, and many of you are concentrating on filling backpacks with school supplies.  At MitoAction, we are thinking about AWARENESS.  As part of our national collaborative campaign with UMDF for Mitochondrial Disease Awareness Week, we want to as you to take ACTION this month.  During the week of September 16-22, we hope to celebrate Mito Awareness with a proud showing of green ribbons, mito t-shirts, and community awareness events.
 
We need your participation!

MitoAction is entering its fourth year and is 100% supported by community donations. Your participation will ensure that we have the necessary resources to improve the quality of life for families that have been impacted by mitochondrial diseases and disorders.  Your donations are used to develop materials and programs that are focused on our mission of support, education, and advocacy.

 
Ways that you can contribute:
  1. Make a tax-deductible donation to MitoAction - for example, a $100 donation will fund the 1-888-MITO-411 support resource for one month.
  2. Approach your employer for sponsorship in Mitochondrial Disease Awareness Week by making a financial, tax-deductible donation.
  3. Donate items to the annual MitoAction auction.  Items such as vacation weeks, sports memorabilia, sports, event or theatre tickets, gift certificates, etc.  Don't forget to ask for support from your family and friends! 
  4. Create your own fundraising awareness webpage and receive a free t-shirt and MITO green ribbon pin!  Many families are amazed by the outpouring of support from their community in response to this email campaign.
  5. REGISTER for the 3rd annual Family Fall Fest and Awareness Walk to be held September 23 in Cambridge, MA!
  6. Forward this email and encourage family and friends to learn more at www.MitoAction.org!
Understanding Mito
Energy Well Spent

 Dr.  Gwenn Schurgin O'Keeffe, MD, is a board-certified pediatrician and Fellow of the American Academy of Pediatrics.  She comments on living with mitochondrial disease after interviewing some patients and parents who are members of MitoAction.

"Energy is part of life. Without it, not much happens. We often don't pay much attention to the energy we use until it is gone. One big snow storm or lightening storm with power outages and we are quickly reminded of how essential energy is to our entire beings.

Having a mitochondrial disorder is like a permanent brown out. Systems work but intermittently and sometimes not at all. In fact, some systems become so devoid of energy they run out of steam. That's when problems arise.

Although vague and albeit difficult to grasp at times, there is a method to the madness each mitochondrial patient experiences. Figuring out that pattern and having a road map to follow will give you a better sense of control and help you take steps to get the energy level back to baseline quicker. As a parent or patient, understanding your or your child's baseline is your road map for staying healthy and anticipating problems as early as possible."
CoQ10 Task Force Wanted
Improving coverage

Weekly we encounter mito families who struggle with copays, costs, and access issues for CoQ10 and vitamin supplements.  Would you like to be a part of a task force who will be charged with the job of
1. identifying the problem
2. brainstorming potential solutions
3. Investigating specific coverage options, including brands, compounding pharmacies
4. Developing a strategy to improve insurance and provider coverage for these supplements
 
 
Merchandise Volunteers Needed for shipping
At MitoAction we rely on volunteers for the ENERGY to get things done!  We are in great need of a couple of volunteers to help us fill our "orders" for merchandise such as the children's g-tube book, t-shirts, pins, brochures, educational materials, etc.
The volunteers would fill an average of 5-10 orders weekly by packaging items (materials provided of course) and taking them to the post office or UPS.
 
Interested? Email your info director@mitoaction.org
 
New England Area Families: Help Wanted
Please consider pitching in to make our 3rd annual Family Fall Fest and Walk for Awareness a success!  Volunteers are needed to help organize donations, registrations, hand-out t-shirts, send letters, etc.!  Contact Kristin at walk@mitoaction.org to participate today!
 
 
Why Join a MitoAction Meeting?
General Meeting Friday August 10
Noon (edt)
  • Meet others across the country who are Mito parents or patients
  • Learn about the goals of MitoAction to improve awareness of mitochondrial disease in order to increase access to care, advocacy in schools, funding for CoQ10 and vitamin supplements, etc.
  • Share your passion and ideas about improving the daily quality of life for people who are living with mitochondrial disease
  • Join in our enthusiasm as we strive to take ACTION and bring about changes that bring families together

The meeting is via conference call only: Toll-free 1-866-414-2828, participant code 017921

Take me out to the Ballgame...
Buy me some peanuts and CoQ10

red sox community 
Catch MitoAction at the Red Sox game in Boston, MA on September 3rd! MitoAction will be proudly distributing mitochondrial disease awareness materials to all the fans as part of the Red Sox community homestand program.
 
Thank you for being a part of our community of friends, family and patients who care about changing and improving the lives of those affected by mitochondrial disease TODAY!
 
Warm regards,
Cristy

Cristy Balcells RN, MSN, Executive Director
www.MitoAction.org