ALS Warrior PoetALS WARRIOR POET
-blazeman

"It's time to give Lou Gehrig 'The Iron Horse' his proper burial."
-Blazeman's Dad


Saturday, March 10th, 2007

I first saw your incredible story while watching the 2005 Ironman. As an avid baseball history fan I consider Lou Gerhig one of the greatest because he was likely the first to give ALS a voice. Your voice has been much louder and stronger thank goodness. The words THANK YOU are not enough to express how you have opened eyes and minds about ALS and hopefully soon there will be a cure.

Mary Ann Pults


Dr. Huott Letter

Thanks Doc,
For giving me the green light to Kona and doing the NBC Interview.
You were nervous??? Welcome to my world bro!!!
-blazeman


ALS INFORMATION
(Click Here)
Quack Watch.org

New PALS: To Save Yourself Time & Money... Avoid Being Scammed By
Quacks & Quackery Science
(Click Here)
ALS Registry

ALS Connection is a patient driven ALS registry to collect data from
ALS patients in North America
(Click Here)

Image of a Neurone Image fill International Alliance of ALS/MND Associations
on the internet

(Click to Visit The Alliance)

Meet Other PALS Here...

ALS RESEARCH

These are the organizations on the cutting edge that the Blazeman trusts and supports.

MDAíS AUGIEíS QUEST AND
ALS THERAPY DEVELOPMENT INSTITUTE (Formerly ALS-TDF)
ANNOUNCE $36 MILLION RESEARCH COLLABORATION
Partnership Combines Vision of Hope and Science to
Become Worldís Largest Drug Discovery Program for ALS

(Click Here For The Press Release)


EXERTS SAY THAT BRAIN DISEASE -
INCLUDING ALS, ALZHEIMER'S, AND PARKINSON'S - IS THE NEXT EPIDEMIC
OF THE 21st CENTURY

Go Out And Buy Some Juice!
Help Support This Research!!

Tuesday, May 22, 2007
ALS Advocacy Day in Washington, DC

On Sunday, May 13th, we drove to Washington, DC to participate in Advocacy Day, held Wednesday of that week. Mark Coughlin, Nancy and my son, Steve, accompanied me. Steven and Mark shared the driving chores and the trip took about 12 hours. I was able to sleep in the next morning as no events were scheduled until Monday afternoon. At that point, we all registered our presence with the ALS Association. There were advocates from every state, including about 150 ALS victims. Afterwards, we went over the specific requests that we were to make when we called on members of the House and Senate. Most important of these was to allocate $24 millio n to fund the first year of the ALS registry. This registry will collect and track data from PALS with the hope of building a database to learn more about the disease.

Monday evening, we attended a candlelight vigil held at the World War II Memorial. Two major league ballplayers, including Tommy John , spoke; and a very pretty young lady sang some sentimental songs. It was very touching to see all the candles burning in the presence of all my ALS partners.

Tuesday morning, a group of us met with an aide in John Lewis's office. He was very attentive and committed himself to doing everything in his power to gain Congressman Lewis's support. The National ALS Association provided us a very nice luncheon and later in the day we went to dinner with our Atlanta group of ALS advocates; I believe there were 15 of us.

Wednesday morning, we traveled to the House and Senate, where we were scheduled to meet with three House members and two Senators. We met House member Jim Marshall and Senator Johnny Isakson. The rest of the meetings were with aides. Our group was split into two parts to create more coverage, and the other part of the group met with several other congressmen. Everyone that I met with committed to help us with all of our objectives.

Our last meeting on Wednesday ended at 5 p.m., and we were greeted by heavy rain showers when we left to get on our bus. Rain is not particularly good for power wheelchairs. I covered my joystick with a plastic bag, and someone held an umbrella over my head. In spite of all this, we were soaked to the skin by the time we got back to our hotel.

It's been a number of years since I've visited Washington, DC. It is truly a beautiful city with attractive older buildings that have been limited by height restrictions. Nancy and I went on several ďwalk and rollsĒ and enjoyed the scenery a great deal. While the trip was exhausting, and I became quite dehydrated, I believe it was well worth while and I'm glad that I went!

Mark's Orchestra was putting on a show Thursday and he flew back Wednesday evening to prepare for that. Steve did all the driving during our return trip, and it went quite well until we got about 40 miles north of Atlanta and came to a complete stop, due to an accident on Highway 85. We really didn't move for about an hour and a half. So our 12 hour trip became 14 hours. They say the mark of a successful trip is being glad to arrive back home; therefore, I pronounce this an extremely successful trip!

ALS can cripple my body, but the death of hope would cripple my spirit. Therefore, I hope on the Lord.

Your friend,
Jack Parker
Georgia

P.S. Johnny Isakson is one of 8 cosponsors of Senate Bill #1382. Also, Jim Marshall and John Barrow have co-sponsored House Bill #2295. There are currently 136 co-sponsors of House Bill #2295.

April 19, 2007

The ALS Association Testifies Before Congress

Jim Thew and his wife Kumiko.

At a Capitol Hill hearing earlier this week, The ALS Association called on Congress to speed ALS drug development and ensure that people with the disease have timely access to new treatments. The Association was invited to testify at an April 17, hearing of the House Energy and Commerce Committee, Subcommittee on Health, which has jurisdiction over several of The Associationís top public policy issues, including the ALS Registry Act and the Food and Drug Administration. The Subcommittee convened the hearing to examine the reauthorization of the Prescription Drug User Fee Act (PDUFA), legislation designed to provide additional resources and funding to the FDA to help expedite drug reviews.

The Association was the only patient organization invited to testify at the hearing, which also included witnesses representing the FDA, the Pharmaceutical Research and Manufacturers of America (PhRMA), the Biotechnology Industry Organization (BIO) and Consumers Union. Jim Thew, a person with ALS and advocate from Chicago who is featured in The Associationís ALS Awareness Month campaign, testified on behalf of The Association. A 34-year-old father of three and Navy veteran, Thew educated the Subcommittee about the disease and shared his personal experiences living with ALS. Thewís testimony provided members of Congress with a better understanding of the true nature of the disease and why Congress must take action to bring new treatments for ALS from the lab to the bedside as soon as possible. The following is Thewís testimony to Congress.

...................................

Good morning Chairman Pallone, Congressman Deal and members of the Subcommittee.

My name is Jim Thew and I am from Machesney Park, Illinois. I appreciate the opportunity to speak with you this morning on behalf of The ALS Association and people living with ALS across the country. I hope that by hearing my experience living with this disease, you will gain a better understanding of the needs of people with chronic and life-threatening conditions and why it is so important that Congress act swiftly to reauthorize the Prescription Drug User Fee Act.

I was diagnosed with ALS in 2004. At the time, I had no idea what ALS was. Amyotrophic lateral sclerosis meant nothing to me, as Iím sure it means nothing to thousands of others when they are first diagnosed. But when doctors say ďIím sorry, you donít have cancer,Ē you know itís not good.

ALS is better known as Lou Gehrigís Disease. It is a neurological disease that destroys a personís ability to control their muscles. You can see what the disease has done to me. I can no longer stand or walk without assistance. I spend most of my time in this wheelchair. You can hear the disease in my voice. Itís taking away my ability to speak. At night, I need the assistance of a bipap machine to help me breathe. Thatís what the disease has done to me so far. But, it will continue to progress. It gets worse.

I call ALS ďthe monster.Ē Thatís because itís the scariest thing Iíve ever faced. I met a young man from Alabama named Eric Obermann when I was in Washington last year for The ALS Associationís Advocacy Day. Heís 24 years-old. His whole life ahead of him. But the only thing he could move was his toes. He could not speak. He could not breathe without a ventilator. He couldnít even nod his head or wink an eyelid. But he was alive Ė you could see the life in his eyes. That he knew exactly what was happening. And thatís why I call ALS the monster.

I know this is what ALS will do. It can strike anyone, regardless of their age, gender, or race. It does not discriminate. And itís fatal; usually in an average of two to five years.

What bothers me and why I am here today is that doctors and researchers donít know enough about this disease. We know it strikes military veterans like me at about twice the rate as the general population. But we donít know why. Thatís why we need more funding for ALS research at the Department of Defense and the VA. We know ALS is a rare disease. But we donít know how many it strikes. Thatís why we need a national ALS registry and why I hope Congress will pass the ALS Registry Act, which is expected to be introduced soon by a Member of this Subcommittee, Congressman Engel. Mr. Chairman, I also want to thank you for cosponsoring the bill last year and hope you will do so again.

We also donít have an effective treatment for ALS. And thatís why the Prescription Drug User Fee Act is so important because we need to encourage innovation and speed access to new drugs that will benefit people like me. There currently is only one drug on the market specifically approved to treat ALS. However, Rilutek, which was approved by the FDA in late 1995, has demonstrated only modest effects, prolonging life by just a few months and only in some patients. Unfortunately, Iím not one of them.

PDUFA includes a number of important provisions and goals that The ALS Association strongly supports.

FDA RESOURCES

First, PDUFA provides needed resources to FDA. When I learned that the FDA receives less funding than what some school districts get, I didnít believe it. As someone whose life depends on the FDAís ability to quickly review new drugs and promote drug development, I strongly believe the FDA needs additional resources to do its job and help people like me. The ALS Association believes that the PDUFA plan put forth by the FDA will provide a much-needed increase in staff and resources and will help the Agency ensure that people have timely access to safe and effective medicines.

DRUG DEVELOPMENT and REVIEW

Second, PDUFA will help speed drug development and drug reviews. As I mentioned, people with ALS currently have only one treatment option. And itís not a great one. However, we hold onto the hope that our nationís scientists and researchers will develop new treatments for the disease that can slow its progression, improve quality of life and, ultimately cure and even prevent the disease from arising. Thatís why it is so critical that PDUFA promote drug development and expedite drug reviews and approvals, including for products not specific to ALS. After all, people with ALS can benefit from advances in the treatment of other neurological conditions such as MS, Parkinsonís and Alzheimerís.

The Association supports the timelines and goals outlined in PDUFA concerning the prompt review of drugs. Delays in drug reviews mean denied access to potential life-saving therapies for people like meóto withhold a drug in order to obtain an unreasonable amount of data could cause patients to suffer or die due to the lack of access to new treatments.

ENHANCED TECHNOLOGY

Third, PDUFA would improve the use of technology at FDA. I spend a great deal of time on e-mail and on the internet. For people with ALS, information technology is our window to the world. It helps us to easily communicate and interact with others especially as the disease robs us of the ability to move and to speak. Itís also how we learn about new ways to fight this disease. Itís clear to me that the FDA also can use information technology to fight ALS by streamlining the drug development and drug review process. It allows the agency to rapidly collect, analyze and understand the enormous amount of information gathered throughout the lifecycle of a drug, during development and after it is approved. The ALS Association is pleased that the PDUFA plan submitted to Congress is an important step forward in using technology to find treatments and cures for diseases like ALS.

COLLABORATION

Fourth, PDUFA includes important provisions that will promote collaboration between industry and the Agency, helping to expedite drug development. This collaboration builds on efforts underway with the Critical Path Initiative. I first heard about the Critical Path Initiative when The ALS Association invited the FDA to speak at our Public Policy Conference last May. I am encouraged that the Agency is making additional efforts to help improve clinical trial design and provide other guidance that enable us to speed the development of new drugs and decrease their cost to develop. I am also encouraged that for the first time FDA has recommended that fees be used to hire additional staff that will make it easier for the agency to collaborate in the scientific research leading to new treatments and to streamline the regulatory process. What is really important to me about this plan is that it is not just focused on the drug review process. It also is designed to speed drug development. The ALS Association is pleased that PDUFA would provide full-time permanent staff and funding for this much needed collaboration that surely will benefit people with ALS and other life-threatening diseases.

I hope that I have given you a better understanding of why PDUFA is so important to people like me. I also hope that you will view this from our perspective Ė it may be a matter of policy for you, but itís a matter of life and death for me.

Earlier I told you about what ALS is doing to me physically - what you can see and hear in my voice. What you donít see is the real impact of the disease. I want to be able to watch my son graduate from high school. I want to be able to walk my daughter down the aisle on her wedding day. I want to grow old with my wife Kumi and play with our grandkids. To do all of that, I need a treatment for ALS. I hope you will act quickly to reauthorize PDUFA and help me in the fight against this monster. I donít have time to wait.

Thank you again for inviting me to be here today.

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