Hello everyone.
It's that time of year again for the
United Mitochondrial Disease Walkathon.
For those of you who don't remember,
mitochondrial disease is what my niece, Ashlee,
died of nearly 10 years ago. Ashlee was the FIRST
PERSON EVER to complete a two year study for
mitochondrial disease at
The University of California San Diego.
The walkathon is Saturday, September 15, at
Liberty Park at 10:00 am.
Although it is a very common disease, most people
know little or nothing about it. Our goal is to raise
awareness and earn money to help support
study and research for a cure.
Please read the information below to learn more
about the disease.
What is mitochondrial disease?
Mitochondria exist in nearly every cell of the human body, producing 90 percent of the energy
the body needs to function. In a person with mitochondrial disease, the mitochondria are failing
and cannot adequately convert food and oxygen into life sustaining energy. For many,
mitochondrial disease is an inherited genetic condition, while for others the body's
mitochondria can be affected by environmental factors.
Mitochondria exist in nearly every cell of the human body, producing 90 percent of the energy
the body needs to function. In a person with mitochondrial disease, the mitochondria are failing
and cannot adequately convert food and oxygen into life sustaining energy. For many,
mitochondrial disease is an inherited genetic condition, while for others the body's
mitochondria can be affected by environmental factors.
How does mitochondrial disease affect the body?
The parts of the body that need the most energy, such as the heart, brain, muscles and lungs,
are the most affected by mitochondrial disease. The affected individual may have strokes,
seizures, gastro‐intestinal problems, (reflux, sever vomiting, constipation, diarrhea), swallowing
difficulties, failure to thrive, blindness, deafness, heart and kidney problems, muscle failure,
heat/cold intolerance, diabetes, lactic acidosis, immune system problems and liver disease.
The parts of the body that need the most energy, such as the heart, brain, muscles and lungs,
are the most affected by mitochondrial disease. The affected individual may have strokes,
seizures, gastro‐intestinal problems, (reflux, sever vomiting, constipation, diarrhea), swallowing
difficulties, failure to thrive, blindness, deafness, heart and kidney problems, muscle failure,
heat/cold intolerance, diabetes, lactic acidosis, immune system problems and liver disease.
Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10. While
exact numbers of children and adults suffering from mitochondrial diseases are hard to
determine because so many people who suffer are frequently misdiagnosed, researchers
believe the disease is approaching the frequency of childhood cancers. Many are misdiagnosed
with atypical cerebral palsy, various seizure disorders, childhood diseases and diseases of aging.
Still others aren't diagnosed until after death.
exact numbers of children and adults suffering from mitochondrial diseases are hard to
determine because so many people who suffer are frequently misdiagnosed, researchers
believe the disease is approaching the frequency of childhood cancers. Many are misdiagnosed
with atypical cerebral palsy, various seizure disorders, childhood diseases and diseases of aging.
Still others aren't diagnosed until after death.
What is the prognosis for these individuals?
Currently, there are no treatments for children and adults with mitochondrial disease.
Although some of the affected children and adults are living fairly normal lives with the disease,
many people are severely affected, and many children do not survive their teenage years. More
research dollars are needed to find more effective treatments and ultimately a cure for
mitochondrial diseases.
Currently, there are no treatments for children and adults with mitochondrial disease.
Although some of the affected children and adults are living fairly normal lives with the disease,
many people are severely affected, and many children do not survive their teenage years. More
research dollars are needed to find more effective treatments and ultimately a cure for
mitochondrial diseases.
(info from the UMDF)
My family had great success last year in meeting
our fund raising goal and we thank everyone
who helped us by making a donation in
Ashlee's memory to our team.
We are hoping to get a good turnout this year
as well. We are a bit late in collecting our
pledges but we hope we will still be able to meet our
fundraising goal of $500.
Please help us to
honor her memory and recognize her contribution
to the study of mitochondrial disease by making
a pledge to TEAM ASHLEE.
Trust me, we know times are tough financially but
EVERY DOLLAR HELPS!
Any dollar amount is greatly appreciated
and helps us reach our goal.
Click (here) to be directed to the web-site
and click on the Donate link to make
a secure, online donation
OR
contact me if you want to give a cash or check donation.
Checks can be written out to UMDF
Your donations are tax deductible.
If you want to join us in walking next Saturday
we would love the support on TEAM ASHLEE!
Click (here) to join our team.
"Grief is loves unwillingness to let go."
~unknown~
Ashlee-
Still grieving after 10 years.....
BUT also HOPING for a change and
REMEMBERING your lovely spirit.
We love you...this is for YOU!
-Aunt Paula
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