| June MitoAction Newsletter |
May 2007 |
|
 Greetings!
Summer is upon us, and for many people with mitochondrial disease,
the heat can be unbearable. Why are mito patients intolerant of
warmer temperatures? The reasons are complex, but in many cases
can be related to autonomic dysfunction. In other words,
the nervous system is unable to regulate the core body
temperature as it should.
Metabolic and Mito specialist Dr. Mark Korson of Tufts New England
Medical Center elaborates, "Temperature regulation mechanisms don't
seem to work so well and so mito patients are often heat and/or cold
intolerant (and even then, sometimes worse than other times). For
example, in some, sweating doesn't occur much (if at all) which can
lead to an intolerance of hot weather (since we use sweating to cool
down our bodies); in others, not only do they sweat in hot temperatures
but they also sweat at night in comfortable ones."
The nervous system not only doesn't act as it should to regulate
the core body temperature, but also seems to be unable to read cues or
act in a predictable or appropriate manner. Solutions for hot
weather? Many families find relief using good planning
strategies, such as:
- Avoid being outdoors in the hottest hours of the day (often between noon and 4 pm)
- Enjoy evening or early morning walks or outdoor activities
- Choose vacations in places with less extreme temperatures
- Use a cooling vest when outdoors
- Plan shorter outdoor activities which have access to water (pools, sprinklers, etc)
- Carry along a mister or hand held fan - even when out for brief periods in the summer
- Fluids, fluids, fluids - find ways to keep fluid intake up with popsicles, frozen drinks, and fruits like watermelon
- Search out indoor opportunities for fun, like movies, bowling, museums, and summer arts and crafts classes
|
|
Mito Awareness Campaign
Plans underway for Sept 16-22
 MitoAction
is proud to demonstrate our commitment to patients and families across
the nation who are living with mitochondrial disease by advocating for
National Mitochondrial Disease Awareness Week. Together with
UMDF, we would like to recognize Mito awareness nationwide during the
third week of September, beginning in 2007.
What can you do to take ACTION?
1. Write your local senator, asking for a formal proclamation from the Governor (for a template letter, email us at awareness@mitoaction.org)
2.
Particpate in our next member meeting July 13 to learn about the
"Roadmap to Awareness". Toll-free 866-414-2828, participant code
017921.
3.
Plan a community awareness event in your area, such as a walk,
trike-a-thon, a white elephant sale, a mito education table at the
library, hospital, school, etc.
For
more ideas, or for MitoAction brochures (which include a description of
mitochondrial disease) to use during your event, join our July meeting
or email us!
New England families - Save the date!
3rd annual MitoAction FallFest & Walk
September 23, 2007 10:00 a.m.
|
Catch MitoAction at Oley!
June 28-29 in Cape Cod
Not
all children with Mito have g-tubes, and not all kids with g-tubes
have Mito, but many have been supported by the Oley
Foundation. Oley (www.oley.org)
is a nonprofit organization that provides information,
psycho-social support, and tools for better living for those on home
and IV tube feedings. This year, MitoAction is proud to
participate at the annual Oley Foundation conference! We will be
there to provide general  information
about mitochondrial disease, as well as to distribute free copies
of our illustrated children's g-tube book, "When Jeremy Jones Stomach
Stopped Working."
To receive your free copy, visit us at Oley or email director@mitoaction.org with "g-tube book" in the subject line. Include your name and address as well as the number of copies you would like.
MitoAction members who stop by our booth at Oley will receive a free gift, so come by and introduce yourself! |
"In the Pink" Promo benefits MitoAction!
Purchase the McKim sandal in June
 10%
of sales from the McKim sandal by trendy New England favorite Lilly
Pulitzer will benefit MitoAction during the month of June!
Purchase the summer thong sandal online at www.inthepinkonline.com or
at select stores in the Boston area. Treat yourself Mito Moms,
and help support families living with Mito at the same time!
A special thank you to Mr. Russell for his generosity with this promotion.
| |
Moms Achieve Mito Awareness
Barrington, Rhode Island
 When
you talk to Kirsten, mom of 2 mito teens, you are amazed at
her tremendous organizational skills and enthusiasm. She is truly
an advocate for her children, and like many members of MitoAction, she
is passionate about using her own successes and lessons to help other
families with mito. Kirsten was instrumental in achieving a
formal governor's proclamation for Mito Awareness Week in RI.
Why??
In her words,
"The
word "Proclamation" by definition is the act of announcing something
publicly or formally. As our family journeys like many others
trying to find support and education for our children with
Mitochondrial disease, it became apparent to us that we needed to be
shouting from the highest mountain that our Mito families are here
searching, praying and reaching for a better understanding of what and
how mitochondrial disease affects us. There is no better way than
through education and advocacy to raise awareness about Mitochondrial
disease. I am proud to say that the State of Rhode Island has
declared by proclamation Mitochondrial Awareness Week. It is not
that we are defined by how we are titled, but recognized by what we
accomplish."
Hamilton, New Jersey
Julianna's mom Millie is another shining example of
advocacy and activism. Daily, she scours the internet for
information about mitochondrial disease, special education, disability
access and awareness. Known on the listservs as "nena1294",
Millie  hands
out information about mito to almost everyone she meets, including her
town mayor. She was able to gain political backing for Mito
Awareness week in her town of Hamilton, and hopefully in the state of
NJ. Millie, mother of 6 children, says, "If I just make a
difference to one doctor, or one mother, or one family, then I did what
I was asked to do. I want people to understand what mitochondrial
disease means. I get up every day, breathe and live for
Him. Life is only as fruitful as the seeds we plant."
Please help and contact your local politicians to
raise awareness in your States. Together we can make
Mitochondrial Disease a household word.
|
|
