Here in Aventura, he’s Glenn Fenster the Bike Guy. We all know his energy and how motivated he is to raise awareness for his son and all others that suffer from epilepsy. Follow him on his website – Destiny Maker

DESTINYMAKER GLENN FENSTER TO KICK OFF

5th ANNUAL EPILEPSY AWARENESS RIDE

What:  Fifth Annual Cross Country Bike Ride for Epilepsy Awareness

When:  Start Time, Monday April 12th, 2010 at 6:00am  Aventura, Florida

End Time, Friday, June 18th, 2010 at 8:00pm Seward, Alaska

Where:  North America

Who: Epilepsy Advocate and Founder of DestinyMaker, Glenn Fenster.

Glenn Fenster, of Destinymaker and South Florida resident since 1984, has biked over 100,000 miles over the last 9 1/2 years to raise funds for epilepsy awareness (including riding from Seattle to Miami,(2006) Anchorage, Alaska to Miami (2007) Denver to Miami (the long way 2008) and Miami to Canada and back (2009)

Fenster says his biking pales in comparison to the courage his son and others exhibit each day they live with Epilepsy. Fenster’s 15 year old son Nyle started suffering from seizures at the age of two. Nyle, along with other children and their parents wage war each day against epilepsy.

For more information on route visit www.destinymaker.org

Hello DestinyMaker’s,

With a April 27th start on this year’s 4th Annual Bike ride for Epilepsy there is still much to do.

First though an update on DestinyMaker. After years of cycling Thousands of miles and watching countless amount of my son’s seizures the dream of DestinyMaker becoming a Charitable Organization has become a reality. It is with great pride that I am able to announce this exciting news. DestinyMaker will now be able to offer a Tax Deductible Receipt on all donations given. This is an historic day for all who have worked with or supported destinymaker.

Please go to www.destinymaker.org for more information on this year’s bike ride. The route has been posted. The mission of destinymaker will be found there as well. You can also join our facebook group. There is a link provided. There are now just under 2000 members. The destinymaker web site has been viewed from 68 countries and close to 2000 cities. I also keep a blog. It can be read at the web site. Currently about 250-300 people read blog each week.

There are many ways to help on this year’s ride for awareness. Not all by making a donation.

1. I need the media. If you are in and can do a story it will help the many parents just like me. Do you know of someone who might be interested in the story? Send them to the web site.

2. After checking route do you live near where I will be biking. Come join me for a few miles!!

3. Know of a Hotel or Restaurant that could offer a meal or room? Let me know!

DestinyMaker will be adding a place for Parents to tell the story of their experiences with a child who has Epilepsy. If you wish your story to be told contact us.

It seems as if I just finished and recovered from last year’s 8100 mile ride. While this year’s will be slightly over 7000 it no less presents the same difficulties and dangers. I ride for you. Every mile I pedal I do so for the many families just like mine. I cycle for the parents who have lost a child to SUDEP. For every person who has epilepsy. I ride for Nyle and the entire epilepsy community.

I wrote to the National Epilepsy Foundation requesting help to walk from my home in South Florida to next year’s 2010 National Walk in Washington DC. I would walk the 1200 or so miles and arrive on the day it begins. I would need help to accomplish such an endeavor. I was sadden not being able to go to this year’s walk. So I decided to offer them this opportunity to help me obtain the goal.

Recently I’ve noticed more stories, events and opportunities for those in Epilepsy. This is great at a time when a cure is needed more than ever. I need your help to help others.

I am not a large organization with small dreams. I am one man with one big dream. To raise awareness that could help inspire someone to find a cure.

Contact me 305-528-7854 cell

Glenn A. Fenster

On April 27th, 2009 Glenn Fenster, Founder of DestinyMaker will embark on a 6000 mile bicycle journey from Aventura, Florida back to Aventura, Florida. Along the way Glenn will ride through and possibly stay in cities such as…
Tallahassee
Atlanta
Asheville
Philadelphia
NYC
Bangor
Halifax, Canada
Toronto, Canada
Chicago
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, with the support of the Epilepsy Foundation of Florida. In 2007 Glenn’s ride from Alaska 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”. In 2008 Glenn’s 3rd annual ride was 8100 miles from Denver to Miami. (the long way).

As some of you may know, I will begin in late April my 4th annual North America bike ride for epilepsy awareness. This 5800 mile ride will take me from my home in South Florida to Maine. Then into Canada toward Halifax in hopes of meeting a little girl named Cassidy who has asked the world to wear purple on March 26th. After I will make my way west toward Chicago to meet up with Idea League an Organization that helps those with Dravet’s Syndrome, a sever form of Epilepsy. On my way I will stop in cities large and small. I will go contact every newspaper and TV station along the way. This will be my first time starting from Florida. My route though not clearly defined as of yet is posted @ www.destinymaker.org.
 
Contact me 305-528-7854 cell
 
Glenn A. Fenster

Event Info
Hosts: DestinyMaker
Fausto Training
 
Time and Place

Start Time: Friday, February 13, 2009 at 8:00am
End Time: Saturday, February 14, 2009 at 8:00am
Location: Country Club Circle
Street: Country Club Drive
City/Town: Aventura, FL
 
Contact Info www.destinymaker.org
Phone:3057882761
Email:DestinyMaker4u@aol.com

Description
Destinymaker’s Valentine 24 hour relay runnathon.
For the love of children and families dealing with epilepsy.
Start time 8:00am Feb 13th Finish 8:00am Feb 14th
Looking for runners to run one hour during the 24 hours.
Our goal is to have someone running during the entire 24.
I will run a marathon during event. 
 
In the next few days there will be a sign up link at the destinymaker web site.
Select the hour you wish to run. Run with friends. A $100 entry fee is asked for the hour.
(if your run in group split the costs)
 
T-shirt/refreshments provided
 
I have a month to put this together and need help.
This will become a annual event!!
 
Other sponsorship levels will be announce this week.
 
Submitted by – Glenn A. Fenster

Christmas day in Aventura has past and folks all over town are looking forward to the New Year. Everyone has positive hopes for 2009, this will be an amazing year. For most people things can only get better at this point. Everyone in Aventura really believes this will be the year of positive change.

To start the New Year in an exciting way, DestinyMaker will cycle for 24 hours around the Aventura Turnberry golf course circle – know as “the circle.” He plans to only stop for bathroom breaks and volunteers will hand him food and water as he rotates around the course. This is a true test of endurance and is a tough task even for Glenn Fenster – the man that this past summer biked 8,000 miles across the country. Let’s not forget why he does this, he’s pushing himself for his son Nyle, 14 years old, who has suffered from seizures caused by epilepsy since age 2. Contact DestinyMaker on their website – www.destinymaker.org. There’s plenty of volunteer time available and donations that are needed, visit their website today.

During this coming week and next you will see flyers around town about this event taking place December 31st 2008 – January 1, 2009. We’d like to give a special thank you to Gabriel at Printing on the Mark for donating thousands of the printed postcards for DestinyMaker. Thanks for your support to propel DestinyMaker for 24 hours.

If you need printing for business cards, postcards, flyers, posters, contact Printing on the Mark at 305.772.5917 for the best prices in town.

Aventura, get ready for an historic event in your backyard. DestinyMaker, Glenn Fenster, will push it to the limit and will bike ride 24 hours straight (bathroom breaks allowed) raising awareness for the epilepsy community. This will take place around “the circle” in Aventura. In order to make this a success Glenn is asking for your help and participation. He needs more people to get involved and support his efforts to find a cure for epilepsy. All donations can now be made directly to “DestinyMaker,” which is on its way to becoming a 501(c)(3) – just waiting for state approval. All checks should be sent to “DestinyMaker” 20533 Biscayne blvd #1313 Aventura, Fl 33180.

Time and Place Start Time: Wednesday, December 31, 2008 at 8:00am
End Time: Thursday, January 1, 2009 at 8:00am
Location: Aventura
Street: Country Club Drive (3 mile circle)
City/Town: Aventura, FL
Contact Info Email: destinymaker4u@aol.com

Glenn will not be riding alone several people will join him for an hour ride with the suggested donation of $100.00 for that hour. In addition, there are many individuals confirmed from all over the world that will usher in the New Year by riding in their country for blocks of one hour. If you want to give but cannot ride, sponsor an hour and watch them go. There are still many volunteer slots open and room for riders. Register NOW – DESTINYMAKER NEEDS YOUR HELP TODAY TO MAKE THIS NEW YEAR EXTRA SPECIAL FOR HELPING EPILEPSY AROUND THE WORLD.

Event Info Host: DestinyMaker www.destinymaker.org

Type: Causes – Fundraiser
Network: Global
Time and Place Start Time: Wednesday, December 31, 2008 at 8:00am
End Time: Thursday, January 1, 2009 at 8:00am
Location: Aventura
Street: Country Club Drive (3 mile circle)
City/Town: Aventura, FL
Contact Info Email: destinymaker4u@aol.com

DestinyMaker’s Glenn A. Fenster will bike ride 24 hours straight (bathroom breaks allowed) raising awareness for the epilepsy community.

#1 Epilepsy Petition… One final push for needed signatures. Using the tag line “I signed will you”

#2 Epilepsy Phenome/Genome Project…. Unlocking the mysteries of epilepsy. Tag Line….needed siblings with epilepsy.

#3 Epilepsy Therapy Project…Advancing New Therapies. Tag line… From Lab to Patient

#4 Money Raised… I will raise money for your favorite Epilepsy organization. Tag Line… Make check payable to them and write in the memo destinymaker 24 hr bikeathon. Send to me and I will forward to each organization all checks received for the event. All monies raised by individuals will go to it’s intended recipient. I do reserve the right to acquire sponsors.

DestinyMaker is following two important projects. I have been asked to help raise awareness about each.

One being undertaken by the Epilepsy Foundation.

“The Epilepsy Foundation is leading the fight to increase funding for research and programs, stop discrimination and improve access to care.

In 2009, a new President, 535 members of Congress and nearly 10,000 state legislators will take office. By signing our petition, you can help us persuade them to support policies that improve the lives of the three million American families affected by epilepsy.

More than 3 million Americans have epilepsy (seizures) and 200,000 new cases are diagnosed yearly. For most, there is no cure and many with epilepsy face discrimination and difficulty accessing care.

I strongly urge policymakers to support efforts that end discrimination, improve access to care programs, and increase funding for epilepsy research and programs.”

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FAQ’s

Q: Why are we collecting signatures?
A: To raise awareness and show policymakers that we need greater funding for research and programs, greater access to quality medical care and an end to discrimination at work and in schools.

Q: How many signatures are we trying to collect?
A: Our goal is to collect 100,000 signatures from across the country. Even if we do not reach this goal, we will make a strong impact by showing that tens of thousands of people support epilepsy. All signed petitions must be received no later than December 31, 2008.

Q: What will happen to the signed petitions?
A: They will be delivered to leaders in Washington, DC in early 2009. They may also be delivered to elected officials in your state.

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Epilepsy Facts:

• Epilepsy is a neurological disorder that affects more than 3 million Americans.

• Approximately 200,000 new cases of seizures and epilepsy occur each year.

• Ten percent of the American population will experience a seizure in their lifetime.

• Epilepsy can affect anyone, at any age, at any time. Epilepsy is not a disease, a form of mental illness, or a sign of low intelligence. It is not contagious.

I urge all my friends to visit www.destinymaker.org and sign the petition. Tell a friend.

Also Epilepsy Phenome/Genome Project

Welcome to the EPGP! We’re a group of researchers, physicians, coordinators, family members, people with epilepsy, advocates, and friends working together unlock the mysteries of epilepsy.

EPGP is the first and largest research study of its kind to understand what causes epilepsy, why people respond differently to medications, and why some families have several people with seizures. The National Institutes of Health is partnering with leading epilepsy professionals, advocacy groups, and families across the U.S. for this 5 year study.

The goal of EPGP is to collect, anonymously, a blood sample and detailed clinical information on people with specific types of epilepsy, in order to improve the diagnosis and treatment of epilepsy for many people living with seizures.

The study is looking for participants who:
1) Have epilepsy and also have a brother or sister with epilepsy
OR
2) Have seizures due to Lennox-Gastaut Syndrome, Infantile Spasms, Polymicrogyria, or Periventricular Heterotopia. (No sibling required, but both parents must also agree to participate.)

Even if you do not qualify to participate, you can help by telling other people in the epilepsy community about this important project. In particulalr, please keep an eye out for siblings with epilepsy and ask them to contact us.

This study has the potential to change to future of epilepsy care for everyone, so please join us in the cause!

More information at:
www.epgp.org
888-279-EPGP