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Subject: Do You Know...
Medication switches pose high risk
As a neurologist specialized in treating patients with epilepsy, I have seen firsthand the struggle patients face when trying to find the correct medication to regulate seizures. The life-long challenge of regulating this disorder is daunt ing enough without having to worry that a pharmacy may substitute their medication without their knowledge. It is vital to re quire the informed consent of both physician and patient before substituting an epilepsy patient's anticonvulsant medication.
Epilepsy and seizures affect more than 129,000 individuals in New Jersey, and 200,000 new cases of epilepsy are diagnosed in America each year. Epilepsy is a neurological condition characterized by recurring seizures that can only be controlled by medication in the majority of patients. However, even small variations in composi tion between medications can cause toxic effects and/or breakthrough seizures when taken by patients with epilepsy. Patients who experience even one breakthrough seizure can lose their job, their driver's license as well as their life. Patients who experience a series of seizures without recovery in between face a life-threatening situation and significant medical costs. With epilepsy medications, it can't be "close enough" -- it has to be right or it's right to the emergency room.
You would think that such sensitive and life-affecting medication would require that patients and their physicians be involved in the decision to alter treatment. However, there is no law in the state of New Jersey to require this, which leaves our state's residents with epilepsy open to the possibility of devastating medical effects.
Fortunately, legislation has been introduced to provide such protection. The Patient Protection Bill (S2071 and A3029) re quires the prior notification of patients and their prescribing physician before substitutions of anticonvulsant medications used for treating epilepsy are made.
As a doctor, I support provid ing each patient with the best medical care and promoting open communication among pharmacists, doctors and patients. We must ensure that patients with epilepsy have the peace of mind of knowing that they can live without the danger of unexpected sei zures due to an unauthorized change in their medication. I urge our legislators to support the Patient Protection Bill -- because one breakthrough seizure, one in jury, one lost life is one too many.
-- DR. SETH M. KELLER, Lumberton
The writer is a physician with Neurology Consultants of Burlington County.
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| Hosts: |
Fausto Training |
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| 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 |
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| Phone: |
3057882761 |
| Email: |
11.15.08
HE MADE IT HOME!!!!
CONGRATULATIONS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
UPDATE : 8.01.08
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Latest Updates from... Glenn's Journey
July 23rd...
Hello DestinyMaker's, Today's blog sponsored by Fractal, Power Smoothie, Microtel, Nature's Plus, Einstein Bagels. Before I update everyone on the past week my blog will now appear on Wed and Sun starting today. I needed one week to decompress and just get away while I rested and tried to regain some strength back. After the intense focus and concentration for 80 days I just needed time to recapture the motivation and my desire to continue with all that DestinyMaker has become. As I said before this 3rd annual finish is not the end but a new beginning on all of our hopes to find a cure for Epilepsy. Now here is what has transpired since I arrived home. I've been very weak. Tired and just a struggle to do anything. After one week I feel somewhat better. Problem is as I get back to the tennis court to work and play basketball with Nyle everyday I am fighting the exhaustion I feel with other areas I have not used for quite some time. I don't feel as much pain in the area's needed for cycling but now everything else hurts. My son won't let me rest. My finances dictate it's time to work. Nyle and I spent Wed thru Mon doing just about anything and everything together. From basketball twice a day. Eating meals together and just hanging out in the apartment watching TV or wrestling. Just doing nothing together is great. I keep watching the video of my arrival and to see the look on Nyle's face over and over again means so much to me. From his running to me, his look of almost disbelief and the final hug were so special to me. Something I will never forget. Nyle hurts so much while I am away he tends to mask the pain by being quick on phone or short in emails. I guess it's his way of protecting his emotions. I have received more calls this past week from him then the entire trip I just completed. I love my son so much. I love my son more than my ability to explain it. I want to thank all those involved with making DestinyMaker 2008 a success. Many of you spent weeks preparing for my arrival. Made sure I places to stay, food to eat. Courage is found in many places not just in my ability to bike thousands of miles. It was found in the children I met. From Friends I haven't seen in years and their children. To the children I met along the way at restaurants, hotels, malls. From the children I spoke to at schools and to one in a wheelchair I will never forget. Names are meaningless. Action is paramount. I can't remember everyone's name but your actions will never be forgotten. When we help another help other's it's not about the individual it's about all we do to raise the awareness so others fund and fight for our Epilepsy community, Not one person is bigger than that. I want to thank all the well wishers and those who wrote to me with encouraging words. They were needed in my darkest moments of self doubt and absolute exhaustion. I want to thank all who have readd this journal. Many of you come back on a daily basis to check up on what the state of DestinyMaker. I want to thank the citizens of this great planet who have come to the DestinyMaker web site. Citizens of 45 Countries and over 800 cities all over the world. I am not a large organization with small dreams, I am one man with large dreams.
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Hello DestinyMaker's,
Today's blog sponsored by the love and bond between a Father and Son.
I slept little. Couldn't wait to get home. See Nyle. But first there was a 57 mile ride home. Into a strong wind from the south. Once I made the right turn onto US1 you could really feel it. I went through towns such as Boynton Beach, Pompano, Ft. Lauderdale, Hallendale. So many memories lined the streets and reflections from glass. 24 years worth. I would like to start new one's, elsewhere. Once Nyle turns 18 nd he is able to handle aspects of life in college. I will seriously think about relocating.
Finally reaching Aventura. I couldn't stop smiling. I am really home. I didn't really eat and Nyle was at the movies with camp. I went straight for fruit. Blueberries, Mango. I sat outside to eat. Already was getting questions like "Where were you" or hearing statements like haven't seen you in a long time. Well I guess not everyone knew what I wa doing.
I went over to Nyle's camp. He called and said he is on the way over form the movies. I told him I was still some miles away. Our excitement was obvious. I hid when I saw Nyle's bus. I gave video camera to a woman who was standing there. Nyle received a call to his cell from a friend saying "your Dad is there" Nyle didn't believe it but he sure starting running. I gingerly stepped out and the moment that had fueled the last month was at hand. My son and I together. I will never forget how he ran over to me. He held on not wanting to let go. When he did want to let go I couldn't. He looks great. Almost as tall as me. The video will be posted soon. I am home..
Nyle wanted to me shoot baskets. I wanted to go home and sleep. I stayed on the court with him for a few. I needed to get some food. Nyle went back to work. I went to get my favorite dish egg plant parmesan over at Roma's. I missed the way they make it.
I went back to Nyle's camp when a police escort was there to take me to final mile. I couldn't believe it was here. I wanted to go slow. Savor the moment. I sure did. I made it over to Power Smoothie for the final mile. there waiting were friends and family. I was so glad for this to be over. I let out a huge yell with fist in the air.
It is done and I am the same. Finished. There is nothing left of me except my integrity and dignity.
Today's Poem...
Title~The End is Never

7.05.08
RELEASE – For Immediate Release
Hello DestinyMaker's,
Today's blog is sponsored by Hotel Super 8 in Marquette, Michigan and MJInnocenceBracelets.
I woke up feeling a bit weak after yesterday. I think it was food poisoning. I did have a good nights sleep. At breakfast the same guys were there wishing me well. Another person there heard the story and was asking questions. He paid for breakfast. His name was Kurt. Thank you to the other guy's and Kurt.
I got on my way in brilliant sunshine. Winds were slight at my back. They did change later in my face. I was riding well. Things were heating up. Today of course is the first day of summer. Hot temps will be the norm from now on. I will just have to deal with it. I bought fruit and stopped to eat when I was hungry. There was lots of road construction that I had to deal with. One truck today came so close I was really scared. I wonder who would have won that battle.
I surprised myself riding after yesterday illness. I was going pretty good and knew I would make Marquette, Michigan. the question was do I go past or take today as a comeback day. Then tomorrow I will do 160 some miles to Sault Ste Marie. Diane and Kathy have made a great team and are really helping me. Fatima in Toronto is trying to arrange things also. I haven't had cell or internet till just now so I am catching up on emails. I called the Days Inn there to inform them I will be there tomorrow. 165 miles away.
I found a Super 8 Hotel in Marquette. The Front desk manager Matt took about 2 minutes to give me a room. I also stopped and was interviewed. After checking in I went over to a local restaurant. But as I was leaving the hotel Matt gave a donation. At the restaurant Joe a person I met also gave one. Amazing! Another day. 100 miles and more awareness. 54 days 5629 miles complete!!
Today's Poem...
Title~Peace
6.18.08
This is why you ride...
You ride for single parents like myself who shoulder the most unbelievable accusations with a smile...
You ride for children like my Bubba whose everyday is marred with some form of seizure--whether it be the dreaded grandmal, petit mal, absence , temporal lobe, mult-focal or even the lennox gastaut syndrome that brings innumerable emergency personnel to the door.
You ride for the career I had to forsake to be here for my child.
You ride for when I get called a freak, a weido and who knows what else..
Keep riding, Glenn.
We all love you.
~ABP~
L.McLaughlin
Founder & President of ~MJIB~Co. PRODUCTIONS©
http://www.mjibcoproductions.com >>>STAY TUNED!
6.06.08. The parcel is on its way!!
6.05.08 Thanks to Phyllis in Winnipeg, we will soon be shipping a parcel of ~MJINNOCENCE BRACELETS~TM for Glenn and Nyle!!!
6.09.08. Glenn is expected in Winnipeg on Friday.: ) and we are hoping for a picture receiving his very own ~Giving It All I've Got..for You~©!!!
6.16.08. GLENN RECEIVED HIS ~MJINNOCENCE BRACELETS~!
Hello DestinyMaker's,
Today's blog sponsored by Jim Gauthier/Rick Therrien Car Dealership and Oakley Alarms.
Just another day. NOT!
After getting myself together which is becoming increasingly difficult each morning I was ready for he ride. I wasn't ready for the emotional aspect to what was about to occur. First up was meeting the current President of the Epilepsy Alliance affiliate in Manitoba, John Saindon. He came to Hotel and got me before 8. We were off to breakfast. A nice chat on the way there. Once there we were greeted by John's wife Eileen and their son's Beavis and Butthead other wise known as Matthew and Landon. Also there was the Wall Family. Diane, Dwayne, Jordan, (broken foot) Hanah and Josh who has Epilepsy. Also there was Wes Uncle of the Wall children and current VP of the Alliance in Manitoba. Good Food and conversation. Laughter and tears. All of us with the common bond of having a child who needs their parents and extended family. Wes gave me money for the journey home. Eileen paid for breakfast and said to me, I am now family. Talk about fighting back the tears.
I want to thank Linda who has not only encouraged me but for taking care of her daughter who has a severe condition. Her company MJInnocenceBracelets Productions made 2 beautiful bracelets. They were given to me a breakfast.
...CONT'D ... on Destinymaker.org.
God bless.
~MJIB~Co. PRODUCTIONS
| Promoting Epilepsy Research & Awareness:~MJIB~Co. |
| We are proudly promoting Destiny Maker 2008's 8100 mile bicycle trip from Denver to Miami -- the long way. Read the story on our BIKE 4 EPILEPSY page on MJINNOCENCEBRACELETS. COM & on DESTINYMAKER. ORG. God Bless ~MJIB~Co. PRODUCTIONS |
TM 2008 MJINNOCENCEBRACELETS All Rights Reserved.
This is the Bracelet I made to mark Mr. Fenster's #3 Journey to Raise Money and Awareness for Childhood Epilepsy!
I hope to assist Mr. Fenster in rasing funds through this new ~MJINNOCENCE BRACELETS~.TM
**************************************************************************************************************************************************************************************************************************************
Details to follow.
~ABP~
| Epilepsy Groups Support 8,100 Mile Bicycle Ride |
| April 22, 2008 | |
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On April 28th, 2008 Glenn Fenster of Aventura, Florida will embark on an 8,100 mile bicycle journey from Denver, Colorado to Miami, Florida (the Long Way). Time and Place: From the President's of Epilepsy Foundations in America and Canada 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! More Press Releases Here: http://www.mmdnewswire.com/bicycle-journey-for-epilepsy-3245.html http://www.mmdnewswire.com/denver-deputy-mayor-bill-vidal-3250.html Glenn A. Fenster
SOURCE: News Wire Underground / ~MJIB~Co. PRODUCTIONS
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Epilepsy Is Our Cause..it Empowers Us...to Find the Cure.

Glenn A. Fenster
305-788-2761 voice mail
305-528-7854 cell
DestinyMaker4u@aol.com
NEWS RELEASE – For Immediate Release
4.15.08
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
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.
04/11/2008
FIRST MILE EVENT
| 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 |
04/11
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
The National Epilepsy Foundation incoming Board of Directors President Joyce Bender who also Hosts an Internet radio show on disabilities will have Glenn as a guest on her show. This one hour taped broadcast will air 2-3pm on April 15th, 2008.
03/14/2008
The 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.
04/03/2008
FIRST MILE EVENT
| 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 |
The National Epilepsy Foundation incoming Board of Directors President Joyce Bender who also Hosts an Internet radio show on disabilities will have Glenn as a guest on her show. This one hour taped broadcast will air 2-3pm on April 15th, 2008.
Glenn A. Fenster
305-788-2761 voice mail
305-528-7854 cell
DestinyMaker4u@aol.com
NEWS RELEASE – For Immediate Release 3/9DestinyMaker 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.3/08Destinymaker announces it's theme song for 2008DestinyMaker announces today a partnership with recording artist Sacha Sacket 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 bya 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 publicto match in funds". I am my best when something seems impossible to accomplish.2/15The 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
MiamiHis 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 CANADAEpilepsy Association of CalgaryCanadian Epilepsy AllianceSponsorship/Donation are available.Can you help.Thank you!!!
Glenn A. Fenster
03/14/2008
The 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.
~MJIB~Co. PRODUCTIONS's Founder & President has teamed up with the super powerhouse of Epilepsy Research Supporter, Mr. Glenn A. Fenster of Florida, USA to bring the crucial need for a Cure for Epilepsy to everyone's eyes.
Like Glenn, I also wage war on a daily basis to help my own child manage her notorious seizures that have controlled her life and her family's life ALL her life.
And this is Glenn's site: http://www.destinymakerevents.com/Glenn/index.html
~ABP~
3.23.08
My Caregiver Award 2004
More On: ~EPILEPSY CREATIONS~ (Sorry by Special Request Invite Only).