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My Uncle Mike Mayo, “walks” on my in behalf in TEAMWALK 2005.
Kristen:
About the charity I am
supporting:
The Spastic Paraplegia Foundation,
founded in 2002, is the only organization in the Americas dedicated to
finding the cure for Hereditary Spastic Paraplegia and Primary Lateral Sclerosis. Please visit our website by clicking on the Logo below.
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 Dear
Family and Friends,
This page was created to request the support of my family and friends (and
their friends) for the Spastic Paraplegia Foundation. SPF is dedicated to
advancing research and ultimately developing cures for two groups of closely
related upper motor neuron disorders called Primary Lateral Sclerosis (PLS)
and Hereditary Spastic Paraplegia (HSP).
My family and I have been personally affected ever since my uncle, Mike
Mayo, was diagnosed with HSP. The SPF is the only organization devoted to
understanding the causes and discovering the cures for these two conditions.
It also serves as the primary source of information on the disorders and
seeks to enhance awareness and establish networking and support programs for
the patient community.
HSP is a term for a group of rare, inherited neurological disorders along
the motor neuron disease continuum. Their primary symptom is progressive
spasticity (stiffness) and weakness of the leg and hip muscles. There are at
least twenty types of HSP and the genetic causes are known for eleven. The
disorder is estimated to affect some 20,000 people in the U.S.
There is currently no treatment to prevent, stop or reverse the degenerative
process of this disease. As a hereditary disease, most members of my
maternal family and I are still at risk as the age of onset is typically
between 35 and 66. Most forms of HSP are autosomal dominant. Since there is
50% chance a child will receive the dominant HSP gene mutation from the
affected parent, there is a 50% chance the child will inherit the gene and
the disorder. This is the risk for my cousins, and a threat my family will
deal with forever. There is also a chance that my mother is a carrier for
the disease, putting my brother and me at risk of developing the disease as
well.
Every year, the Spastic Paraplegia Foundation (SPF) holds a national
conference and fundraiser for research to find the cures for HSP and PLS.
This year, the main event will be held in Long Island, NY Sept. 15-17. I am
attending the conference on Saturday, but I will unfortunately not be able
to walk on Sunday in the TEAMWALK. Instead, I will be participating in the
Philadelphia Distance Run, still in honor of my Uncle, as a reminder of how
fortunate I am to have the physical ability to run each and every step of
the 13 miles.
As someone whose livelihood depends on physical activity, I can’t stomach
the thought of one day having this losing this ability and enjoyment. My
Uncle Mike is more passionate about and skilled in many sports, and I know
our family is very thankful that playing darts does not require much use of
his legs. Unfortunately, he is unable to participate in many others. As I’ve
already asked many of my friends, can you imagine me, or even yourself, in
the same position?
I know that most people will not be able to attend one of the events held
nationwide throughout the fall (see the schedule on the homepage of SPF),
but I know I can count on your support!
HOW CAN YOU HELP?
SUPPORT ME... You can donate online below with your credit card through
PayPal (a secure site) using the Donate button or print out the Sponsorship
Form and mail it in with your donation. Any donation is appreciated—from one
to one hundred, it adds up and every bit counts!
IF YOU’RE IN NEW YORK… Participate in TEAM WALK on September 16, or come
support those who are walking. I’m still looking for someone to walk on my
behalf! You are more than welcome to attend the conference with my mom and
me.
IF YOU’RE NOT BUT STILL WANT TO PARTICIPATE… See the schedule of nationwide
TEAMWALK events, or register to
Walk by Proxy. Someone will walk on your
behalf, like my uncle did for me in 2005!
My uncle’s condition worsens each day but it is the thoughts and prayers of
loved ones that keep him on his feet, and he will again participate in a
TEAMWALK this year with the support of his family and friends. Of course, he
is also encouraged and enabled by the research of the Spastic Paraplegia
Foundation. By supporting this foundation and raising awareness among our
friends, we are taking steps toward a cure and finding a way to prevent
these diseases from crippling future generations.
As always, thank you for your support!
Love,
Kristen
Print this Sponsorship Form to mail in
a check or provide your MC/VISA credit card information.
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