ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Tuesday, October 20, 2009

This Should Be Required Listening For Every American



Thank you, New York Times, for the patient voices of ALS.

What American has not heard about the balloon hoax? None, you say?

What American has not heard about ALS? Many, you say? It's time to use these marvelous voices captured by The New York Times to spread the word about something truly important. This is a matter of life and death.

These people are American heroes.



http://www.nytimes.com/interactive/2009/10/19/health/healthguide/TE_ALS.html?ref=health

Thursday, October 15, 2009

Raise A Hot Cup Of Coffee And Toast Dane Boersma

Sad news from the Portland Business Journal

http://portland.bizjournals.com/portland/stories/2009/10/12/daily38.html

Thursday, October 15, 2009, 2:46pm PDT
Dutch Bros. Coffee cofounder dies
Portland Business Journal

Dane Boersma, who with his brother Travis founded
Dutch Bros. Coffee, passed away Thursday due to complications from amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease.

He was 55.

Dane Boersma and his brother founded Grants Pass-based Dutch Bros. in 1992. The company now operates 150 locations in Oregon, California, Washington, Idaho, Nevada, Colorado and Arizona. It has 80 full-time employees.

The company was recently recognized by the Portland Business Journal for its philanthropic efforts. Dutch Bros. contributed $525,000 to various charities across Oregon last year, and another $225,000 in other states in which it does business.

Donations in Dane’s name can be made to Dane’s Drive, a Web site created by Dutch Bros. to raise money for Lou Gehrig’s/ALS disease research. All proceeds benefit the Muscular Dystrophy Association, ALS Division, to find a cure for this fatal disease. A link to Dane’s Drive can be found on the company’s Web site, www.dutchbros.com.

A public memorial service will be held on Monday, Oct. 19 at 1:00 p.m. at the Parkway Christian Center, 229 N.E. Beacon Drive in Grants Pass.

Monday, October 12, 2009

Tick, Tick, Tick


AT LONG LAST there was some national media mentioning ALS in NFL players. Here's the 60 Minutes story on the aftermath of head trauma in the NFL.


CBS 60 Minutes Story



Look for the mention of Wally Hilgenberg.


Here is a list of professional football players with (or who have died from) ALS. If there are more, please let me know and I'll add to the list.





Eric Scroggins
O.J. Brigance
Glenn Montgomery
Pete Duranko
Peter Demmerle
Steve Smith
Tony Proudfoot (CFL)
Bob Waters
Matt Hazeltine
Gary Lewis
Orlando Thomas
Wally Hilgenberg

It seems worthy of some investigation. It may have nothing to do with head trauma, but who knows? It's outrageous that such a "who knows" disease has been permitted to go on like this.


Perhaps the NFLPA should be interested.

Thursday, October 8, 2009

"Coming Soon" News On The ALS Registry

Unfortunately it's not coming soon enough. From the following communication from the ALS Association Washington, DC, office, launch is expected to be in late 2010. Don't get as excited as I did when you read the first sentence. The CDC has simply launched five flat web pages with helpful information on ALS and the registry concept.

Today, October 8, the Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry (CDC/ATSDR) is launching the National ALS Registry website. This is the first phase of building a website that later will include an online portal where people with ALS can enroll in the ALS Registry. The website is available at www.cdc.gov/als.
The ALS Association also will host a link to the Registry website on our homepage at
www.alsa.org.

In this initial phase, the ATSDR will provide up-to-date information about the registry, including answers to frequently asked questions such as who can enroll in the registry, whether enrollment is mandatory, and who will have access to the registry. The site also will include helpful information about the disease itself, including links to information about ALS research and clinical trials as well as to organizations, like The ALS Association, that provide assistance and support to people with ALS and their families.

In the next phase, the website will enable people with ALS to enroll in the registry. However, before that can happen, ATSDR must first obtain an Institutional Review Board (IRB) approval and other approvals required by law to ensure that personal information collected by the registry is kept private and protected from misuse. This process already is underway and The ALS Association will assist in any way we can to secure the necessary approvals in order to speed enrollment in the registry.

Enrolling in the Registry
As ATSDR pursues the approvals necessary for the next phase, we are partnering with the Agency to keep the ALS community informed and we will notify PALS as soon as they can self-enroll via the ALS Registry website. If you would like to receive this notice, please visit The ALS Association's website at
http://capwiz.com/alsa/mlm/signup/
and sign-up to be an ALS Advocate. Please select ALS Registry when signing- up. This is especially important because, due to privacy rules, PALS will not be able to request that ATSDR notify them about the status of the registry, including when they can begin to enroll.

If you have any questions about this update, please contact The ALS Association at
advocacy@alsa-national.org or toll-free at 1-877-444-ALSA.
Thank you

Action Item From ALSA

Following is a communication sent from ALSA Washington, DC, office. I took the liberty of making bold several critical elements. Your messages to Senators are urgent. You snooze, PALS lose!

My name is Jeff Faull and I am the married father of two beautiful daughters. I was diagnosed with ALS in 2007 at the age of 38 after serving two tours of duty in the United States Navy. I am writing to ask that you join me in urging Congress to increase funding for the ALS Research Program (ALSRP) at the Department of Defense.
The ALSRP is the only program at the DOD dedicated specifically to ALS, a disease that strikes veterans at twice the rate as the general public. But what really makes this program so vital is that it is supporting translational research with the explicit goal of finding a treatment for ALS - something that will benefit everyone fighting this disease.
Earlier this year, I joined nearly 1,000 fellow advocates - PALS, caregivers, families - in Washington, DC for National ALS Advocacy Day. Together with my wife Tammy and 15 year-old daughter Tiffany, we met with our Members of Congress and requested they provide $10 million for the ALSRP, double what was provided last year. I am proud to say that our meetings made a difference - The House of Representatives met our request and passed legislation that included $10 million for the ALSRP!
But, the fight is not over. That's because the Senate version of the bill does not include funding for the ALSRP. And with a House-Senate Conference Committee expected to make the final decisions on funding for the Department of Defense within the next week, it's possible they may eliminate funding for the ALS Research Program.

That's why I'm asking for your help today. Available on The ALS Association's website is a letter you can send to your Members of Congress. Please use that letter to
tell Congress how important this program is to those of us living with ALS. Let them know that research made possible by the ALSRP not only will benefit military veterans, but all people with ALS. It can help us find an effective treatment for a disease that currently has none.
The letter can be found here: http://capwiz.com/alsa/home/. Please act today. It's simple to do, but it can mean the difference between $10 million for ALS research or zero. So join me in this fight. Together, we will continue to make a difference.
Sincerely,
Jeff Faull
McEwensville, PA
Dx 2007
P.S. At National ALS Advocacy Day in May, I had the honor of participating in a wreath laying ceremony held at Arlington National Cemetery to pay tribute to those we have lost in the war against ALS. Joining me for the ceremony were fellow veterans and PALS Jim Thew of Illinois and Ken Patterson of Florida as well as Sharon Harrison of Virginia, who lost her husband, a Vietnam veteran, to ALS.
The ALS Association produced a video of the ceremony to help raise awareness of the disease and build support for our cause. I invite you to view the video here: http://www.alsa.org/policy/article.cfm?id=1516.
As Veterans Day approaches on November 11, please share this video with everyone you know. Post it to your Facebook page, send it to your email list. Help us continue to raise awareness of this disease and its impact on veterans and all Americans. Most important, help us build support for our cause so that we can find a treatment and cure as soon as possible.
Thank you!

Monday, October 5, 2009

Can We Learn From Another "A" Disease?

There are a number of articles in today's news about the prevalence of autism being higher than was ever thought.

http://www.usatoday.com/news/health/2009-10-05-autism-increase_N.htm

Two new government studies suggest autism spectrum disorders are becoming more common in children in the USA. However, researchers say, it is not clear how much of the increase is a result of more frequent and earlier diagnoses and how much is a result of a real rise in the conditions...


Ten years ago I watched a parent with a very young child with suspicious symptoms being dismissed by multiple physicians as a worry-wart. Only with a mother's relentless and heroic pursuit of a correct diagnosis was the autism case recognized and dealt with early. Autism was perceived as an unlikely and "rare" condition ten years ago. There are no biomarkers, so an easy slam-dunk diagnosis with a lab test is not possible. It takes expertise and judgement and elimination of other conditions to reach the diagnosis. It also takes a willingness on the part of a physician to recognize it. Today pediatricians and primary care physicians realize that one in ten eight-year-olds probably has an autism spectrum disorder. It is recognized and dealt with early because physicians know what to look for and know that early intervention is critical. To add to the awareness, those overlooked infants from ten years ago are in school today and their challenges are obvious not only to their parents but also to our school systems. What a difference ten years have made.

Does any of this sound familiar? ALS is perceived as a "rare" disease. Doctors are programmed that they may see at most one case in a career. ALS also has no biomarkers for that easy slam-dunk diagnosis. It takes some judgement to recognize it, particularly in early stages. It takes a willingness to see the clues and follow them to the correct diagnosis.

To add to the medical blinders when it comes to ALS, physicians know that they can't cure it. Is Dr. Freud at work when a physician misses an ALS diagnosis? Is something in the back of the doctor's mind saying "no harm no foul... I couldn't have done anything to cure it... the patient was going to die anyway?"

Piling on to healthcare's looking for everything but ALS in a patient is the fact that the "rare" designation carries some benefits related to orphan drug status, etc. That word rare is a catch-22. The technical designation "rare" has some regulatory benefits. The word rare holds back the societal recognition of the ALS problem.

If we had some large-scale studies and a working registry with aggressive efforts to identify cases of ALS, would some startling new prevalence numbers suddenly cause physicians to pay attention to that little old lady will slurred speech and a weak neck? With ALS, if that particular case isn't diagnosed within a few months, the patient will be dead without any reference to ALS in her medical records or on her death certificate.

Perhaps ALS is not so "rare." Perhaps if a couple of studies break that myth that we'll see the level of recognition of the disease and early diagnosis that we see in autism today.

When you pay attention, ALS isn't so rare. We have failed to get society to pay attention.

Autism numbers grow and healthcare professionals and parents who are now paying attention have a lot to do with that. The more they see, the more they see.

Thursday, October 1, 2009

Give This Campaign An "A" In Creativity







...and an "A+" in awareness-raising.

Twitter is quite atwitter today with the one-day Tweet for ALS campaign.

The CEO of Quicken Loans is behind it and all proceeds go directly to the ALS Association Michigan Chapter.

They're out to raise $10K today and are in the process of raising the noise level about ALS... a good thing all around.

http://www.tweetforals.com/

...and if you tweet, follow @tweetforals