Focus on ALS on July 4 and Always

Nineteen years ago I was exposed to Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s Disease. I am excited beyond belief that on July 4, 2009, Major League Baseball will finally honor a man who gave so much, all really, of himself to the game and its fans.

I remember the day I met Dick Bergeron like it was yesterday.  I was with the Philadelphia Phillies at the time, and we had a meeting one day with a representative from The ALS Association to coordinate the annual Phillies Festival.  I was in awe of the courage that Dick showed in the face of his disease, and so my wife Shonda and I found something to commit ourselves to:  the ALS cause.

Everything happens for a reason, the Lord does work in mysterious ways. I had always been bothered by the fact that ALS was not even on Major League Baseball’s radar as something to work to fight or raise awareness. Little had been done in the past. But it appears to me now that that is perfectly ok and is the best possible thing that could have happened.

How is that possible you might ask?

Major League Baseball is sitting in front of more people, being seen, heard and watched by more pairs of eyes than at any time in its history. On July 4th of this year more people will receive an introduction to ALS, what it is, what it does and what it means, than on any day in the history of mankind.

For that we have Commissioner Bud Selig to thank. His eagerness to participate in the 70th anniversary of one of the five most famous speeches of all time is something people with ALS will be forever grateful.

MLB has the power to change the world when focused and delivering the right message, and I am proud to see that message being presented to the world this year.

People will learn of a man who truly was one of the few athletes in our lifetimes warranting the label Hero, Courageous and Warrior. He battled this fatal illness for at least a full year while continuing to play baseball. If that doesn’t resonate with you, I beg you to at least understand what ALS does to the human body, and mind. If you do that much you will grasp some semblance of understanding of why this man should and will be celebrated.

But most important, Lou’s legacy will live on in all of you who see it in your hearts to contribute to the research that we need to find a cure for this horrific disease and to make the lives of people with ALS just a little bit better until we find that cure.

God Bless

Curt Schilling

Read more of Curt Schilling’s blog at www.38pitches.com and Donate Now to The ALS Association

10 Comments

Curt,

Having been diagnosed with ALS 4 years ago this is the first time that the average person will be introduced to this disease. I will be at Yankee Stadium with my wife and 1 year old son taking in all of the days happenings. I’m sure I’ll shed more then a few tears that day and hopefully some will be tears of happiness.
Thank you for all of your work.
Peace

Michael

I will be at Fenway Park on Saturday along with my children and other family members in memory of my husband Phil. He was diagnosed in spring 2007 and passed away September 2008. As a family journeying the road of ALS, we faced many challenges, but just as many good people helped us through those times. Continued reasearch and awareness are key to eradicate this horrific disease. I am so pleased that MLB has joined this endeavor.
Being at Fenway Saturday will be wonderful, but not the same with my Phil. I’m sure he’ll be there in spirit watching his beloved Red Sox. Thank you for all you do in the fight against ALS.
~Mary

Dear Mr. Schilling, You?re a hero to so many people for your help in raising money for ALS Research, and as the son of a man suffering from ALS and as the grandson of a man who died of ALS 30 years ago, I offer sincere thanks for using your visibility and compassion so constructively.

I am wondering now if I can recruit you to an additional campaign in the fight against ALS, in concert with the patient services and future research supported by the ALS Association. Our crusade is to empower the 35,000 ALS patients of today to try existing but not-yet-clinically-trialled medicines in their fight to survive. Gene therapy researchers across the country agree that, with the glacial calendar of clinical trial process and the very short lifespans of ALS diagnosees, not a dollar of future research money will save a single life of the CURRENT ALS population.

Terminally ill Americans have had their Congressional (CFR Title 21, Section 34) Compassionate Use rights violated by the FDA, in the FDA/CDER?s repeated but unsubstantiated rejection of IND applications to use the drug Iplex against ALS. Are you aware that Iplex has already been acknowledged by FDA as both safe for human use, and potentially helpful in fighting ALS? The individuals who have had the chance to try this drug have had overwhelmingly favorable results from the drug, and in some cases a reversal of symptoms. Though it would be foolish to mistake anecdotal evidence for empirical proof, it would be equally foolish ?and disgraceful in the case of policy makers- to dismiss the potential of this drug and to obstruct access to the drug when today?s ALS sufferers have absolutely zero effective alternative in trying to beat the ALS.

I urge you to look at the Iplex issue. I have been following it for 6 months, and there is a growing group of us fighting to restore the legal rights of terminally Americans to try un-approved drugs.

I think we have a miraculous opportunity to raise awareness of this issue on July 4th. Unfortunately, clinical researchers and ALS patient care clinics earn an enormous amount of money in the existing patient protocols, which attempt little more than to prepare patients to go home and die with dignity. They have nothing to gain by supporting ?unproven? therapies, and they broadly disparage rational, educated ALS sufferers who are considering them. It takes guts to speak out for patients who want to fight for their lives. Will you join us? Please, there is more to do than requesting more funding and more awareness. ALS sufferers of today need us to be aware of their plight; they need people like you fighting for their rights to not be cast away and their rights to try drugs that could save them.

Sincerely,

Jess Rabourn
FB Group: REAL ALS Awareness on July 4th!
http://www.alsjusticnow.org

Mr Schilling,

Thank you for your support and advocacy for the ALS community.

Any public comments encouraging the FDA to approve experimental drugs, specifically IPLEX, would be most appreciated. I along with 100’s or even 1,000’s of other patients have been denied IPLEX for seemingly political and nonmedical reasons. This is an extremely frustrating situation as so many have reported positve results from experimental use of IPLEX

Thanks again for your support in our fight against this devasting disease.

Ron Garikes

Dear Mr. Schilling,

As the daughter of a woman who is suffering from ALS, I thank you for everything you’re doing to help promote awareness of this horrible disease. However, I have an urgent request of you. Please help save the lives of those living with ALS today by helping them to gain access to an FDA-approved drug called Iplex. This drug has been found to have positive effects on people with ALS, and should be made available to them ASAP… before it is too late. Please feel free to contact me for further information.
Thanks,
Marie

Dear Mr. Schilling,
Thank you so much for raising awareness and money for ALS. My husband was diagnosed two years ago at age 34 while we where pregnant with our first child. His progression has been rapid and we have had little hope to hang on to. We pray everyday that Iplex will be made available to him as we have told there are no other treatment options for him. He is an Desert Storm Army Veteran and a very proud American. Thank you so much for all your hard work and support,
Erin Beckman

Dear Mr. Schilling,

This is such a great opportunity and exciting to see the enthusiam major and minor league baseball has shown to support an awareness campaign.

My co-worker, an attorney and friend was formally diagnosed last year and I have watched his deterioration. The one thing that I can say for him is that he keeps as positive of an attitude as possible. We joined forces along with MDA, ALSA, ALSTDI and our minor league team here in Boise, Idaho – the Boise Hawks – to present and support the ALS Awareness Initiative. Our Boise Hawks have been wonderful in their support of this disease and bringing out an awareness campaign. It is people like you and other ALS patients who take an opportunity to make something positive about this disease while fighting it yourself.

Sharon – in Boise – GO HAWKS!

Hi again Mr. Schilling,
Today while watching baseball, my husband, Chris, said more than anything, he would love one of the jerseys with the 4 ALS patch. I searched online and could not find a way to buy a jersey with a patch or even the patch by itself. His favorite team is the Mets. If anyone might know how I could get him one, please email me at aquablue@me.com. Thank you…..he rarely asks for anything but seemed really excited about this and wants it to leave to our daughter.
Erin Beckman

Hi again Mr. Schilling,
Today while watching baseball today, my husband, Chris, said more than anything, he would love one of the jerseys with the 4 ALS patch. I searched online and could not find a way to buy a jersey with a patch or even the patch by itself. His favorite team is the Mets. If anyone might know how I could get him one, please email me at aquablue@me.com. Thank you…..he rarely asks for anything but seemed really excited about this and wants it to leave to our daughter.
Erin Beckman

Hi again Mr. Schilling,
Today while watching baseball today, my husband, Chris, said more than anything, he would love one of the jerseys with the 4 ALS patch. I searched online and could not find a way to buy a jersey with a patch or even the patch by itself. His favorite team is the Mets. If anyone might know how I could get him one, please email me at aquablue@me.com. Thank you…..he rarely asks for anything but seemed really excited about this and wants it to leave to our daughter.
Erin Beckman

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