From: Susan
Zelenko [mailto:susanzelenko@comcast.net]
Sent: Tuesday, September 05, 2006 12:09
AM
Subject: Mitochondrial March on Boston
Common -- Please distribute!
September 2, 2006
For Immediate
Release
PRESS
RELEASE PRESS
RELEASE
PRESS RELEASE
PATIENTS,
CLINICIANS AND MEDICAL AND SCIENTIFIC STUDENTS
WALK
ON
OF
MITOCHONDRIAL DISEASES
The
Mitochondrial Disease Action Committee (MDAC) is hosting the 2nd
Annual Family Fun Walk and Auction to promote awareness of Mitochondrial
Diseases on Saturday, September 30, 2006. The event will take place at the
Parkman Bandstand in the
The
Mitochondrial Disease Action Committee includes patients, family and friends
living with or caring for individuals with mitochondrial diseases. They have
joined together with clinicians from
Mitochondrial
diseases stem from poor energy production within human cells, resulting in a
kaleidoscope of complex and oft-misdiagnosed health challenges. These
progressive diseases can appear quietly, or suddenly, strike at any age, and
within any organs. Symptoms can include but are not limited to muscle
weakness/pain, exercise intolerance, heart disturbances, stroke-like episodes,
dementia, deafness, blindness, droopy eyelids, pulmonary weakness, liver,
kidney, gastrointestinal and/or pancreatic dysfunction, vomiting, seizures, or
metabolic acidosis. The
disorders range in severity from progressive weakness to
death.
Although there is no
cure, patients must treat the various symptoms. Patients struggle with
correct diagnosis and treatment, since the number of patients far exceeds the
number of specialists able to take on such challenging case
loads.
The incidence of
these disorders runs approximately
1:3000-4000, although clinicians agree that the prevalence is undoubtedly much
higher due to incorrect diagnosis. To date, more than 40 types of
Mitochondrial Disease have been discovered.
“Mitochondrial science is very cutting-edge right
now,” says MDAC spokesperson Susan Zelenko, “Everywhere you look
there’s word out about research linking mitochondrial dysfunction to Autism
(such as Rett’s Syndrome), to Alzheimer’s Disease, Parkinson’s, Diabetes,
cancer, obesity, and of course aging…, “she says.
“The headlines
remind us daily”, she highlights, “mitochondrial science is booming incredibly:
it helps us to track down criminals. To trace our genetic ancestry.
We used the technology after 9/11 to identify remains. We’ve used it in
the context of the Mitochondrial Eve. We’ve explored controversial
mitochondrial fertility treatments. Some AIDS drugs damage
mitochondria. The list goes on…” Ms. Zelenko is quick to say that
despite the recent interest in the field, however, there just isn’t enough help
for patients, and that the MDAC seeks to actively attract more medical and
scientific students into the field. Currently, the group is publishing a
patient manual, a physician manual, and a children’s book. Additionally,
volunteer “Mito Advocates” go into schools and workplaces to educate and
provide logistic solutions for patients in those
environments.
# #
#
For more information
please contact:
Susan Zelenko at 781
489 5005 or susanzelenko@comcast.net
Kristin Murray at
978 223 1613 or walk@mitoaction.org
The
MDAC is a federally tax-deductable 501(c)(3)
organization.