The 2008 National Walk for Epilepsy
Mark your calendars- on March 29th, 2008 the Epilepsy Foundation is hosting its 2nd Annual National Walk for Epilepsy. The Walk takes place in Washington, D.C. during a very beautiful time of year, cherry blossom season. Now is a great time to sign up and start raising funds, both to get there yourself and/or to raise money for the Foundation. This is the American Walk for Epilepsy -- I'll discuss below plans for Canada's First National Walk for Epilepsy.
Long Overdue- But Better Late Than Never
Finally, a National event to raise awareness and money for epilepsy. Epilepsy is probably one of the oldest known disorders. Pythagoras and Socrates were said to have suffered from seizures. Why is it that only now (2500 years later) we are seeing National Walks and other great fund-raising initiatives for epilepsy? Better late than never though, right? Right.
Speaking of "Better Late Than Never"
My wife and I attended the 1st Annual National Walk for Epilepsy last year and it was wonderful. This might be old news to some, but I thought I'd post on it for those of you who don't know about the Walk or are interested in some details. It took place on the National Mall, Washington D.C. on March 31, 2007. It consisted of walking 5kms (why would an American foundation advertise a 5 kilometer walk? I guess a "3.10685 mile Walk" doesn't roll of the tongue very well) down the National Mall and by all of the great museums and heritage buildings.
Before-hand, I presented my research at the National Institutes of Health's "Curing Epilepsy 2007" conference in Bethesda, Maryland. This conference consisted of talks by some of the world's most eminent epilepsy researchers. Naturally, the conference promoted the Walk and many of the conference attendees stuck around for an extra day to take part in the Walk.
I was excited about the Walk. My nephew had been recently diagnosed with epilepsy and my wife and I saw this as a great chance to support him. The Walk began Saturday morning, bright and early. It was a gorgeous Spring day. My wife and I did a few cartwheels outside the Canadian Embassy on our way to the National Mall. The energy was a mixture of sadness and hope. Many people had team shirts made up for the Walk. Some shirts told of how a loved one died of SUDEP (Sudden, Unexplained Death in Epilepsy). Others had shirts telling everyone what State they were representing.
Some people did the 5km Walk in a wheel chair. Some ran the 5km. Most simply walked the Walk (pardon the pun). It was very exciting being surrounded by 3000 other people with a common goal/desire: to raise money and awareness for epilepsy. In the end, the Walk was a success. There were representatives from every State (I suspect that we were the only "Canucks" present) and they raised a little over $1,000,000 for the Epilepsy Foundation. That money will go towards supporting those with epilepsy, promoting epilepsy awareness and funding some epilepsy research.
Why a Walk?
A National Walk is a great way to raise both money and awareness for an issue. Most of the 3000 walkers solicited support from several friends and family members. The word really gets out there, causing a ripple effect that brings the topic of epilepsy into the collective conscious of a Nation.
A Canadian Walk for Epilepsy
Canada is currently in the early stages of organizing a National Walk for Epilepsy. The goal is have the Walk in mid- to late-2008. I'll definitely keep everyone updated as the plans progress.
Onward and upward!
Kirk.
Tuesday, December 18, 2007
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2 comments:
My band played at the First National Walk For Epilepsy, in 2007, and we will perform live at the Second National Walk For Epilepsy. This 5k walk-a-thon will take place on Saturday, March 29, 2008, on the National Mall in Washington, DC. We will be playing an original song, written especially for the Walk For Epilepsy. I am the lead singer and manager of Jugglehammer, and I have had epilepsy almost all my life. Hear "The Walk", by Ty and Karie Naquin, at http://www.gigmasters.com/coverband/JugglehammerClassicRockAnd/
Glenn A. Fenster
305-788-2761 voice mail
305-528-7854 cell
DestinyMaker4u@aol.com
NEWS RELEASE – For Immediate Release
3/9
DestinyMaker announces dance4epilepsy.
DestinyMaker and the Dance Community are uniting to raise money for scholarships and Epilepsy awareness throughout North America. DestinyMaker will offer scholarships to children either in dance or who want to be in dance that have Epilepsy. Money will also support other Dance Organizations that promote and support children and use Dance as a way of therapy. Go to www.destinymaker.org to learn more.
3/08
Destinymaker announces it's theme song for 2008
DestinyMaker announces today a partnership with recording artist Sasha Sackett who has given DestinyMaker permission to use his song "Stuck in the Sunset" as our theme song for our 2008 3rd annual bike ride and DestinyMaker Video. Sackett writes about biking some miles with Glenn " Definitely sounds awesome" and in his reply to use of his song "go for it".
2/25
DestinyMaker has expanded it's goal of raising $250,000 by 2010 to $1,000,000.00.
DestinyMaker's founder Glenn A. Fenster writes " I am limiting the possibilities by
a goal of $250,000. The challenge seemed with in reach which in turn offered something attainable."
Fenster goes on to say " Now I ask of myself to quadruple my effort while I ask the public
to match in funds". I am my best when something seems impossible to accomplish.
2/15
The Spring Issue of Medizine's Healthy Living Magazine has published an article on Glenn Fenster.
The two page spread quotes Fenster saying "I am a man on a mission". You can find the magazine at Pharmacies and Doctor's offices all over America. Distribution 3.5 million, Readership 16 million.
2/03
Glenn Fenster's son Nyle was selected out of thousands by the National Epilepsy Foundation to be Florida's teenager to attend the Speak Out Speak Up Conference in Washington DC. One child from each of the 50 States is selected.
From Denver to Miami (The Long Way) - One Man’s 8100 Mile Bicycle Journey for Epilepsy
On April 28th, 2008 Glenn Fenster of Aventura, Florida will embark on a 8100 mile bicycle journey from Denver, Colorado to Miami, Florida (the Long Way).
Denver
Phoenix
LA
SF
Seattle
Vancouver
Calgary
Toronto
NY
Philadelphia
Atlanta
Orlando
Miami
His inspiration and reason for this ambitious undertaking is his 14 year-old son, Nyle, who has suffered from acute epilepsy since he was just two years old. Glenn is riding to show his son that no matter what the disability, everyone has the capacity to reach for their dreams. He does not ride just for his son, but for other kids and adults living with epilepsy.
In 2006 Glenn biked 4036 miles from Seattle Washington to Miami Florida, to promote epilepsy awareness, supporting the Epilepsy Foundation of Florida. Last year’s ride from Alaska supported Epilepsy services and programs in America and Canada, added another 2500 miles to his journey, along with the challenges of the ‘northern climate’, which can be unpredictable and definitely much colder then what he experienced previously. According to Mr. Fenster, “This trip pales in comparison to the courage my son and others exhibit each day”.
"My son Nyle was diagnosed with Epilepsy when he was two years old. Since then, he has had hundreds of seizures. He has them everyday. They occur when he sleeps. Five years ago on the tennis court he went for a shot and a seizure occurred. He fell to the ground hard. By the time I got to him running as fast as I could the seizure had ended. I gave out my hand to help him up. He refused any help. I asked him, "How do you keep getting up"? He answered, "Dad, I've never seen you stay down." I decided right there I would do something that would raise the awareness of all who suffer from seizures the courage my son shows. Days later I had a plan. I decided to bike from Seattle to Miami (47 days) 4036 miles completed in 2006. In 2007 I biked (65 days) 6200 miles from Alaska to Miami. This year I will bike 8100 miles. One might think the most difficult challenge would be the training. Day after day, riding mile after mile, cycling in rain, wind, heat, darkness. One might think it would be the terrain. Unable to practice in the mountains, they are a struggle to climb. One might think it's the 50 pounds extra of supplies I have to carry. One might think it would be the exhaustion I feel. One might think it is the loneliness of the asphalt. But no, the most difficult challenge for me is being away from my son. It is my goal by 2010 to have raised $250,000. I want to send children like my son to Epilepsy supported summer camps through out America and Canada. I want to break down the walls of stigma associated with Epilepsy. I do this to show everyone that no matter what disability of the mind or body, anything can be accomplished. That my son is like you and I. Epilepsy is what he has, Not who he is."
This is a email to Larry King from Epilepsy Alliance of Canada.
You interview many politicians, entertainers, etc. but I know of an amazing "everyday hero", who has been working unbelievably hard to raise awareness and funds for epilepsy because his son suffers from it. He works just below the radar, but has made a GARGANTUAN effort to make a difference - he totally encapsulates the concept "The Power of One"
I'd like to see you interview Glenn Fenster (and maybe his son Nyle if he were up to it)- the amazing father who is making his third long distance bike trip in the US and Canada to raise awareness and funds for epilepsy. His 14 year old son Nyle has epilepsy - and this man has biked thousands of miles to raise awareness, funds, and hope for sufferers throughout North America. This is an amazing and inspiring story - Glenn and Nyle need our support! This year's trek will total about 8100 miles in about 64 days.
I've attached a news release I've prepared for when he arrives in Canada - which outlines his story. I had the pleasure of meeting and working with Glenn last year for the Canadian leg of his journey. He is the real deal. I've also attached a word document which contains a few photos from his time in Canada.
I've worked in the epilepsy community for 21 years and I have never met anyone like Glenn - who is working so hard to make a difference...he is inspiring hope in people throughout North America as never before. However - as epilepsy remains a very stigmatizing condition, he has not received the National/North American profile that he so richly deserves, and which would help unite those affected by epilepsy, and raise general understanding to unprecedented levels. In Canada, epilepsy organizations are enthusiastically supporting Glenn. We will do everything in our power to support, welcome, and celebrate his spirit and achievement. People are excited to see him.
Please consider supporting Glenn and Nyle and this amazing journey! Have him (them...) on your show!!! I can't think of anyone with more heart! (as big as three universes!) He deserves a hero's welcome, a hero's send off - and some kind of medal for all his is doing!
Kathy Fyfe, Calgary, Alberta CANADA
Epilepsy Association of Calgary
Canadian Epilepsy Alliance
Sponsorship/Donation are available.
www.destinymaker.org
Can you help.
Thank you!!!
Glenn A. Fenster
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