You all remember the show we did back on March 5.  Well Glen just sent me an update on what is happening with his organization and I wanted to pass along the information to all my listeners as well.

First in case you haven’t listened show here is some information about Glenn and his son Nyle, you can also listen to the interview by clicking here:

On April 28th, 2008 Glenn Fenster will embark on a 8100 mile bicycle journey from Denver, Colorado to Miami, Florida (the Long Way).

In 2006 Glenn biked 4036 miles from Seattle Washington to Miami Florida, to promote epilepsy awareness, with the support of the Epilepsy Foundation of Florida.

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.

Updates:

03/20/2008 DestinyMaker  founder Glenn A. Fenster is excited to announce today a product sponsorship from CytoMax for the final phase of training and the 2008 DestinyMaker 8100 mile bike ride raising awareness for epilepsy. CytoMax featuring the patented energy source Alpha-L-Polyactate. CytoMax will supply Fenster enough product for final phase of training and everyday on his ride.

03/14/2008The National Epilepsy Foundation named Nyle Fenster of Aventura their new spokesperson on Friday. Nyle, 14, is scheduled to fly April 1 to Washington, D.C., to meet with congressional leaders. He will lobby for epilepsy public health programs and research toward a cure. Nyle is one of 50 young people with epilepsy participating in Kids Speak Up!, a national program coordinated by the Epilepsy Foundation with support from Abbott.The program rallies young ambassadors with epilepsy between the ages of 7 and 16 to advocate for the more than three million Americans living with the condition. ”He is an ideal candidate because of his desire to achieve his goals despite his challenges. Nyle’s courage is an inspiration to us all,” said Eric R. Hargis, president and CEO of the foundation. www.destinymaker.org 

NEWS RELEASE – For Immediate Release

FIRST MILE EVENT

Time and Place
Date: Monday, April 28, 2008
Time: 8:00 am - 8:30 am
Location: Hilton Garden Inn
Street: 1400 Welton Street, Denver, Colorado, USA 80202
City/Town: Denver

 

Destinymaker announces Denver’s Deputy Mayor Bill Vidal will attend, speak

and ride with Glenn one mile representing the City of Denver and it’s citizens.
Glenn heard today just how excited the Deputy Mayor is about joining him

for the symbolic first mile of 8100.

 

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
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 upcoming 8100 mile 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 $1,000.000. 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.”

From the President’s of Epilepsy Foundations in America and Canada

 

We commend Glenn Fenster on the start of his 8100-mile bike ride to raise epilepsy awareness. There are continuing myths and misinformation about epilepsy still pervading the media and the mind of the public—including the totally incorrect idea that you should put something in the mouth of a person having a seizure. We applaud Glenn’s efforts to spread the truth about epilepsy. The stigma facing people with epilepsy around the world is one of the greatest enemies they face, and the stigma must end.

Eric Hargis, President of National Epilepsy Foundation

On behalf of the Canadian Epilepsy Alliance/ Alliance Canadienne del l’Épilepsie, we extend our best wishes to Destiny Maker Cyclist, Glenn Fenster, for a safe journey. Glenn, you are doing much to unite those living with epilepsy, increase awareness, and raise funds throughout North America. Your efforts are to be commended. Epilepsy organizations will be on hand to greet and support your amazing journey in each of the Canadian cities you visit. You are doing much to bring epilepsy… ‘out of the shadows’ and into the light. You carry with you the hopes and dreams of people throughout North America whose lives are touched by epilepsy.

Thank you and safe travels!
Catherine Sauerwein, President
Montreal, Canada
Canadian Epilepsy Alliance/ Alliance Canadienne de l’Épilepsie

 

EPILEPSY ASSOCIATION OF CALGARY
 

I am writing this letter to provide enthusiastic endorsement for the 2008 Destiny Maker Ride
for Epilepsy. This is my second time being involved with Glenn Fenster’s ride, and I can
personally attest to the unbelievable courage, spirit, and determination of Mr. Fenster in raising both awareness and funds for those living with epilepsy throughout North America, if not throughout out the world. He gives life to the concept, “The Power of One”. Having worked in an epilepsy organization for the past 21 years, I can say without question that I have never seen any effort that equals that of Mr. Fenster. I have personally witnessed and experienced the impact he has had on parents, children, and adults living with epilepsy - and to say that it is “amazing” is an understatement. He has inspired people of all ages and from all walks of life to believe in themselves and believe that a world free of stigma and prejudice is possible, and, that they can help make a difference. He has reduced geographic boundaries and has helped unite people from all over North America. From a child struggling alone in a small town, to a parent coping with epilepsy in a large city, I am proud to say that I have seen the impact Mr. Fenster has made in their lives.

Furthermore, as someone who is passionate and committed to my work in creating awareness and  reducing the stigma so commonly associated with epilepsy, Mr. Fenster has also had an enormous impact on me personally - providing a renewed sense of hope and inspiration that can get so easily lost in the day to day struggle of never having enough hours enough people, or enough resources to accomplish all that still needs to be done. However, the Destiny Maker Cycle for Epilepsy is a project that promotes such positive energy - that the extra work associated with welcoming this North American Hero is not nearly the burden one might think - and it pales in comparison to the enormous journey Mr. Fenster will undertake and the personal sacrifices on his part to make a difference for his son and for people throughout North America who live with epilepsy. Now that’s worth celebrating!!!

In Canada, my colleagues and I are preparing to welcome Mr. Fenster, and do what we can to make his journey easier. For the most part, our organizations are small, consisting of as few as one person to a maximum of four to five people. We are looking forward to welcoming Mr. Fenster into our communities, cheering him on, being inspired, supporting, and promoting his efforts to raise the profile of epilepsy. I am more than willing to discuss this ride with a colleague or a potential media member and can be reached at (403) 230-2764 if I can provide any insight or information.

Mr. Fenster deserves no less than all the support we are able to provide!

 

 

Kathy Fyfe Executive Director

EPILEPSY ASSOCIATION OF CALGARY