U N I T E D M I T O C H O N D R I A L D I S E A S E F O U N DAT I O N C H A P T E R N E W S L E T T E R
New England mito MESSENGER
The Second Annual
“MITO WALK AND FAMILY FUN
DAY” a Success
More than 300 people from all over
New England participated in an exciting
and fun
event on
the LEGO
Campus in
Enfield, CT
on Saturday,
October 10,
2009. The
event raised
more than
$21,000.00
and a lot of
awareness
for mitochondrial disease. You can still
make a donation at www.mitowhat.
org.
Participants were able to take part
in a walk around the campus, as well
as participate in many different events
and activities. As a highlight for the
event, Steve Gerling, LEGO Master
Builder, orchestrated a human ring around
the “HOPE” floor mural. Gerling helped
everyone create LEGO models which
represented “HOPE”. The families loved
meeting a “Master Builder” and seeing
announcements
UMDF Receives $250.00 Award
Tian Connaughton, treasurer for the
New England Chapter of UMDF, had an
opportunity through her employer to
obtain $250.00 for a charity of her choice.
Henkel Rocky Hill encouraged employees
to nominate charities through their
‘Help Your Neighbor’ campaign as part
of Friendship Day. Thank you Henkel for
recognizing UMDF.
Connaughton Fundraiser
Maddie Connaughton and her family
held a fundraiser on Friday, October 30,
2009. A local paranormal researcher/
spirit medium entertained about 60
some of the amazing LEGO sculptures that
were on display.
State Representative Karen Jarmoc (DEnfield) attended the event and discussed
support issues with families. She
delivered a proclamation
recognizing ‘Mitochondrial
Disease Awareness
Week’ in the state of
Connecticut. “It is an
honor to commemorate
the New England UMDF
for continuing to raise
awareness and educate
our community about
CHAPTER OFFICERS
Heidi Bailey
PRESIDENT
Maura Buckley
CO-VICE PRESIDENT
Stefani Bush
CO-VICE PRESIDENT
Tian Connaughton
TREASURER
Terri Connaughton
SECRETARY
UMDF Mission
To promote research and education for the
diagnosis, treatment and cure of mitochondrial
disorders and to provide support to affected
individuals and families.
Volume 3 • Issue 3
Fall 2009
the concerns regarding mitochondrial
diseases,” said Rep. Jarmoc.
Thank you to the LEGO Group who
generously provided a fun location for
people with facts about ghosts and
paranormal activity. Gerry O’Malley and
Dan Connaughton helped put together a
slide show about mitochondrial disease
and UMDF, highlighting area children and
their families living with this disease.
Gift baskets and items were raffled off
and snacks were available for purchase.
Thank you to everyone who donated raffle
items, baked goodies, made the slide
show, and/or assisted at the event. A fun
evening was had by all, and information
about mito was given to each attendee. In
all, $1000.00 will be donated to UMDF.
the walk. Thanks to Bill Betel for musical
entertainment and to all the people who
gave or obtained raffle items. Lastly, thank
you to all the volunteers who made the
day of the walk run smoothly and provided
mitochondrial disease information to the
public.
Project: Cure
Stefani Bush and a friend have compiled a
CD with a variety of music styles, ranging
from pop rock to folk, to provide healing
through music while raising awareness of
UMDF, Immune Deficiency Foundation, and
National Ataxia Foundation. Physical CDs
can be purchased at www.projectcuremusic.
org. MP3 downloads are available at iTunes,
Napster, Rhapsody, eMusic, and AmazonMP3
(search for Project Cure.) Proceeds from
the sale are split between the three
organizations.
If you have an event you would like to highlight, a story or a poem to submit,
please contact Terri Connaughton at territoys@yahoo.com. *Please note the
change of email from tacmito@yahoo.com, which is being disabled.
www.umdf.org | P 508•927•6262 | nengchapter@umdf.org | www.umdf.org/nengchapter
“Our” Day on the Hill
By: Maura Buckley
scientists working in mitochondrial medicine to find
he United Mitochondrial Disease Foundation has been
an organization that our family has rallied around since treatments and a cure! We are grateful to Representative
McDermott for introducing and supporting this landmark
we were first introduced to mitochondrial disease five
legislation and very proud to be a part of the efforts of the
years ago. We have three children and our two youngest
“mito” community.
boys were both diagnosed with forms of the disease. In
June, my daughter and I jumped at the chance to help
Note: HR 3502 will expand existing research efforts
UMDF move critical legislation forward, by taking a trip to
at the NIH and foster greater coordination among
Washington D.C. and meeting
NIH Institutes involved
with a few of our state
with different aspects of
Senators and Representatives.
mitochondrial research to
The opportunity was well
improve our understanding
worth the efforts to coordinate
of mitochondrial disease and
support for the boys while we
dysfunction and to develop
were away for the day.
treatments for mitochondrial
disease.
This experience was
inspiring to both of us as we
HR 3502 directs the
did not realize what an impact
National Institutes of Health
we could make just by telling
(NIH) to establish an Office
our story. We stressed the
of Mitochondrial Medicine.
need for increased support
The newly created office
for research and coordination
will be directed to improve
in the field of mitochondrial
the coordination of research
UMDF New England Chapter members in Washington, DC
science and medicine. We
related to mitochondrial
with Senator John Kerry’s aid Megan Thompson
were welcomed and supported
medicine within the institutes
by legislative staff and other
at the NIH and with outside
families who were there to advocate as well.
researchers. It also calls on the NIH to annually award
ten grants for multi project research programs related to
My daughter, Gillian, who is eleven years old, was
mitochondrial medicine. In addition, the legislation calls
able to reach out to these important law makers and tell
on the NIH to establish “Mitochondrial Medicine Centers
them what it is like to be a sibling of two young brothers
for Excellence” to promote interdisciplinary research
with mitochondrial disease. She talked about seeing
and training related to mitochondrial medicine. The bill
them in pain, the many medicines they take each day, the
also calls on the NIH to establish a national registry for
emergencies that take them away to the hospital (Mom
the maintenance and sharing for research purposes and
and Dad too) and her worries about their future. Gillian
creates a biorepository for DNA and tissues collected from
was an important voice to be heard, as were all of the
patients with mitochondrial disease and dysfunction for
UMDF advocates that arrived on the hill that day.
research purposes.
We are grateful for the response we received in
For more information about the legislation or to find
person and later by email correspondence. We hope
out how to advocate for it, please go to http//www.umdf.
that our continued efforts to follow up on HR 3502,
org/HR3502.
The Mitochondrial Medicine Research and Treatment
Enhancement Act, will help UMDF and the brilliant
T
Need a Gift Idea?
Looking for a gift idea for a teacher, mail carrier,
or hard- to- buy- for person? How about
donating to the United Mitochondrial Disease
Foundation in his/her honor? It’s guaranteed
to be something they don’t have and they won’t
tuck it away in some closet.
NEW UMDF New England Chapter
Walk Coming this Spring to the
Boston Area!
More Information will be E-mailed to the
Chapter Soon!
You can also visit www.umdf.org/nengchapter
for chapter updates!
© 2007 United Mitochondrial Disease Foundation. All rights reserved. Mito Messenger is intended for informational purposes only, and UMDF assumes no liability for information provided herein. It is strongly
recommended that you discuss any diagnoses, treatments or medications with your physician.