Get out the crayons!
Children's coloring contest
Submission Deadline November 25
We
would like to share your child's drawing on our MitoAction holiday
card, and share their message of hope with everyone this
season.
Submit your drawings by email
(scanned as saved as a jpg) or by mail. Start drawing today for a
great cause and chance to share! Multiple winners may be selected.
Details:
Submit artwork, drawings, sketches, crayon pictures, etc. to
or by mail to
MitoAction Coloring Contest
14 Pembroke Street
Medford MA 02155
no later than November 25, 2007.
Theme: Sharing your Energy |
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Awareness Continues all Year
Families strive to make an impact
"P.S. I love You"
In
Needham, Mass. a new club has been created by the children of Prince
Street. In an effort to collect money and raise awareness about
Mitochondrial Disease, the kids hosted a Tea Party and information
session along with games and activities for the younger ones. Three
generations of neighbors and friends came together and raised more than
$500 for MitoAction. The club is named "P.S. I love you" and plans to
host several other events this year including a dance class for 3-7
year olds and an art class.
Way to go Kids!
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| Adults form Advocacy Coalition
adults@mitoaction.org
In
response to the overwhelming need for support, medical advice, and
recognition of the increasing adult mitochondrial disease population,
MitoAction has championed an adult advocacy coalition.
Learn
more at our open monthly meeting (next one held December 7 @ noon
eastern time by teleconference, 1-866-414-2828, participant code
017921) or drop an email to Jean & Wendy at the address above to get involved!
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Edison Pharma shares vision
"We wake up in the morning thinking about mitochondrial disease..."
 CEO Dr. Guy Miller shared his vision for the future at MitoAction's November meeting (open to all, first Friday of the month @ noon eastern time).
"Mitochondrial
disease, and discovering treatments for these respiratory chain
disorders, is the sole reason that we exist", says Dr. Miller as he
spoke candidly with 20+ members of MitoAction, including adult
patients, spouses, parents, and clinicians from all over the country
and Canada.
Edison
Pharma is currently working with the FDA for human use of an improved
form of CoQ10 which has implications for use and treatment in patients
with mitochondrial disease, Frederich's ataxia, and other
diseases which result from a defect in the respiratory
chain. The CoQ10 derivative drug has demonstrated the ability to
effectively prevent cellular injury and improve energy function, and
will be begin therapeutic safety trials in healthy volunteers in 2008.
Dr.
Miller and Edison Pharma are very supportive of MitoAction in
our mission to create quality of life initiatives, education, and
awareness programs. "The work that you do to generate awareness
and to educate patients, parents, and the medical community about
mitochondrial disease will only make all of us more sucessful in the
end," he says.
Stay tuned for updates from Dr. Miller about this exciting development in 2008! |
Mito 411 Volunteer Training this Friday
Support others with Mito!
What's involved with becoming a Mito 411 volunteer? It's simple.
Join
a volunteer training (90 minutes, held by phone) this Friday at 10 am
(eastern time). Experience actual call situations, learn about
active listening and support techniques, and understand how our
toll-free support line works.
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Share your ideas...put them into Action to help others!
Deadline for all project proposal submissions is December 31, 2007.
Each year,
MitoAction asks our community of patients, parents, and caregivers to
describe your ideas for projects or programs which meet the MitoAction
mission to improve quality of life for all living with mitochondrial
disease through support, education and advocacy.
We really want your input! MitoAction remains committed to the idea that we can collectively be the voice of all who are affected by mito.
Your ideas are important, because they reflect the understanding of one
who is living with the daily challenges of mito.
Share your ideas, and hurry - the deadline is approaching!
Examples from 2007:
Children's illustrated g-tube book
Mito Adolescent interviews
Primary Care Physician's Guide
Mito Minutes with Dr. Gwenn
Recycling for Special Needs Families
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Personally,
I can't believe Thanksgiving is around the corner! While I may not yet
have a turkey, I can sincerely say I am always thankful for this
wonderful, supportive community of other patients, parents, and
caregivers who know firsthand how difficult some mito days can be, yet
choose to go on living.
Happy Thanksgiving!
Cristy 
Cristy Balcells RN, MSN, Executive Director
MitoAction
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Greetings!
