Our recent trip to the Epilepsy Awareness Day at Disneyland
brought us face to face with many wonderful and inspiring advocates – all full
of life, laughter, education and a passion for managing and curing epilepsy!
Epilepsy Awareness Day at Disneyland not only is a way for
families affected by epilepsy to connect with others while being at the
Happiest Place on Earth, it is also an educational opportunity. EADDL was started three years ago by Brad
Levy and his wife, Candy, along with the enthusiastic support of pediatric
neurologist, Dr. Diane Stein. These three are tireless advocates not just for
great epilepsy care but for a cure for epilepsy.
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| Dr. Diane Stein and Robert |
While I did not have an opportunity to meet the Levy family
(next year for sure!), I did meet Dr. Stein as did Robert. They became fast
friends and we promised to participate in the International Epilepsy Day which is February 8, 2016.
Fact: There are approximately 65 million people
world-wide living with epilepsy (Epilepsy.org). 65 million people affected by epilepsy – not even counting families,
friends and caregivers!
There were so many advocates at EADDL!
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| Julie Hutchison and Robert in a Mickey Mouse nose |
Seeing Julie Hutchison, founder of the Chelsea Hutchison Foundation,
is a delight for me (and obviously Robert). Julie’s foundation is a founding
partner of the EADDL and has raised money to bring several families to the
event each year. Also, through their advocacy, CHF recently gave their 84th
grant for a seizure response dog! Julie’s story is one of resilience yet is
heartbreaking. Julie and her husband, Doug’s beautiful daughter Chelsea died
from SUDEP. They walk through that
unfathomable grief to help others. Julie shared with me during one of our chats,
“It is the reason I get up in the morning.” That kind of advocacy is an
inspiration.
Julie is an inspiration.
Fact: Epilepsy is also
a disease that can be deadly. According
to CURE Epilepsy, “It is estimated that up to 50,000 deaths
occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden
Unexpected Death in Epilepsy (SUDEP), and other seizure-related causes such as
drowning and other accidents." 50,000! This number stuns me every time I read it.
The EADDL Educational Expo brought a day of speakers and a
large conference room of advocates and exhibitors. The Expo was full of a wide
variety of organizations sharing information (medical professionals, dietary
experts, medical technology companies, service dog companies and many, many
others. You can see the complete list here.)
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| EADDL 2015: Expo Room |
Another EADDL founding partner, the Danny Did Foundation, was at the Expo. CURE Epilepsy was there. The Purple Peace Foundation was
there. Livy’s Hope, Sophie’s Journey, International League Against Epilepsy all
were there.
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| EADDL 2015: Expo Room |
Families visited each booth soaking up the information so
they can be the best advocate they can.
Fact: While two-thirds
of people with epilepsy are able to find good seizure control, the fact is one-third
do not (Epilepsy.com). That is one-third too many!
Many advocates and organizations were borne out of the loss
of someone to epilepsy or have been affected by epilepsy in some way and are
advocating for the cure or management of epilepsy.
All an inspiration. All doing something to manage or cure
epilepsy.
The day in Disneyland did not have had exhibitor booths but
there were probably a couple of thousand families enjoying the park in their
EADDL purple shirts. Each one of them an advocate in their own way for their
friend or loved one with epilepsy.
Watch out, Epilepsy! You cannot win against this much
advocacy.
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| EADDL 2015: A Sea of Advocacy |
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