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.

Monday, May 31, 2010

As We Remember On This Memorial Day

There are thousands of Americans who have served our nation in the military who have made and will make the ultimate sacrifice long after they arrive home from their active duty.


We need to make more people aware of this troubling fact. Once you have served in the U.S. military, you are twice as likely to be diagnosed with ALS at some point in your life than the general public. Please help pass this information to legislators, military physicians, veterans organizations, and the press.

ALS is a completely unacceptable fringe benefit of U.S. military service!

What is K ALS?


Strike out ALS.

2004 MLB playoffs. Curt Schilling. The bloody sock. The ALS advocate who knew that the world's cameras would be on his right foot.

Hard to believe that was almost six years ago. We have lost hundreds of thousands of to ALS globally since then. We need to K ALS. Now.

Friday, May 28, 2010

The Bravest Person In This Year's Indy 500 Isn't Driving A Car


"Crew member stays positive as he fights ALS"
by Phillip B. Wilson
Indianapolis Star
May 28, 2010 (Carb Day)
http://www.indystar.com/article/20100528/SPORTS0107/5280325/1004/SPORTS/Crew-member-stays-positive-as-he-fights-ALS

Carey Hall cherishes this Indianapolis
500, perhaps more than any other. It's his
15th, working on a crew or painting cars,
and it likely will be his last over-the-
wall opportunity at Indianapolis Motor
Speedway.

Diagnosed with amyotrophic lateral
sclerosis (ALS) on Jan. 10, the 40-year-
old Greenwood man's speech is slurred
and he has atrophy in his left hand from
the progressive neurodegenerative
disease that attacks nerve cells in the
brain and spinal cord.

He was supposed to fuel for Sarah Fisher
Racing's Jay Howard, but Howard didn't
qualify. So he agreed to help out Sunday
with Bruno Junqueira's No. 33 Fazzt Race
Team car.


Please take a moment and read the whole article. This is one brave man (pictured above in the Dollar General firesuit) with a remarkable attitude.

Sid Collins, the beloved voice of the Indianapolis 500 whose words, "Stay tuned for the Greatest Spectacle in Racing" are still used today, died in 1977 after an ALS diagnosis. Thirty-three years later, there is still no known cause. There is no cure.

It's time for the greatest spectacle in medical research.

Wednesday, May 26, 2010

ALS Awareness and Good Business Go Together

http://www.als.net/News/Article.aspx?id=5367

“We hear from the ALS community that they want the pharmaceutical and biotechnology sector to know more about ALS and invest more in research and development. We are pleased to use the industry’s premier convention to elevate the standing of ALS in the minds of big pharma and big biotech. The outcomes from our meetings this week could have a direct and tremendous impact on the pace of research,” explained Dr. Perrin regarding the goals of participating in this week-long convention that took place May 3-6.

Tuesday, May 25, 2010

If You're Not Sure What ALS Is...

just watch this. It's the most important ten minutes you can possibly spend today.

Friday, May 21, 2010

Bruce Edwards -- It Was He

The story of Bruce Edwards and Tom Watson will be carried on the Golf Channel. Warm up the tv.

http://www.worldgolf.com/newswire/browse/63032-Golf-Channel-presents-Caddy-Life-Bruce-Edwards-Story

...and in the words of Tom Watson, "Damn this disease, damn it."

Thursday, May 20, 2010

Darren and Family Get ALS Advocacy

...as they help others deal with the disease without a cure.

http://www.fosters.com/apps/pbcs.dll/article?AID=/20100520/GJOPINION03/705209901/-1/SANNEWS

The Tele-Care network would be a huge step forward in helping patients and caregivers for whom even simple trips to physicians can be major projects.

Tens of thousands of us who have seen ALS attack a parent admire Darren and family.

Tuesday, May 18, 2010

We're Glad Somebody Was Taking Notes

Here is a wonderful recap of the ALSA Advocacy Conference provide by Rob Goldstein of ALS TDI (another ALS not-for-profit organization). This is a hugely valuable resource. We are grateful to Rob for taking notes and filling in some gaps.

http://als.net/News/Article.aspx?id=5368

Thursday, May 13, 2010

Only In America, Land Of Opportunity


It's nice living in a country where your nation gives you permission to set up a display for your cause in the shadow of the seat of government. On a cold and rainy Tuesday while hundreds of ALS advocates called on their legislators to ask for funding for the ALS registry under development and funding for ALS research, the Piece by Piece display stood nearby on Capitol Hill. Hundreds more visitors and government workers and legislators walked through the display and learned about Lou Gehrig's Disease. They will not forget. The beautiful Capitol dome reminds Americans and the world of the wonderful achievements of our country while the silent mannequins were screaming to our national conscience that we have some outstanding business to deal with -- ALS.

It was another good day for ALS awareness. It was a good kick in the pants from ALS advocacy in a setting where there are people who have the power to do something meaningful.


Monday, May 10, 2010

Mothers' Day = Good Day for Advocacy and Awareness in the U.S. Capital



The Piece by Piece display was a big awareness success on Pennsylvania Avenue yesterday. It is a striking, artistic, simple, magnet that grabs both attention and interest.





Steve Franks, the man with ALS who drove the display from Florida to Washington, was featured with his mother on the Washington Channel 4 NBC affiliate news last night at 11 pm.





It looks like Dunn & Company is receiving recognition for their creative contribution to ALS awareness with the Piece by Piece display. They not only donated their considerable creative talent and grasp of ALS, they also showed up and helped carry mannequin stands and sandbags to make that display happen in Washington.





http://www.prweb.com/releases/2010/05/prweb3977414.htm





It was a good Mothers' Day.

p.s. Mothers' Day news feature -- around 1:20 into the segment the display and Steve Franks and mom are featured...
http://www.nbcwashington.com/around-town/events/Celebrating_Mother_s_Day_Washington_DC.html

Saturday, May 8, 2010

The Picture Says It All


Life Is Good... And Trippy

What a wonderful educational experience for some students and a city and a world!

http://www.boston.com/yourtown/news/hingham/2010/05/life_is_good_hingham_high_stud.html

Be sure to watch the video.

At Long Last We Have Found Redeeming Social Value in Facebook


Following the Piece by Piece display's drive to Washington, DC, is a treat.


I trust that the travelogue with pictures and comments will continue through the weekend and next week. It seems like a miracle that the edge of http://www.stealingpieces.org/ will be on display in our nation's capital, and we are so glad to be able to follow the journey on Facebook. Their tweets are great, too, but the pics on FB are priceless.


Wednesday, May 5, 2010

A Big Weekend For ALS Advocates Is Just Around The Corner


Tens of thousands of people world will be praying for those dealing with ALS --
http://www.wehaveaprayer.org/

Hundreds of people will be converging on Washington, DC, for the ALSA National Advocacy Conference and Advocacy Day--
http://www.alsa.org/policy/alsday.cfm?CFID=6004792&CFTOKEN=cd6e43c63e0e3b74-68A956C0-188B-2E62-8027EFE58D6EACB9

Many more people will become aware of ALS stealing lives from the Piece by Piece display in Washington, DC. The experience will sear ALS in many people's minds.
http://webfl.alsa.org/site/PageServer?pagename=FL_PiecebyPiecetoDc

The battle against ALS will benefit from prayers, meaningful government action, and worldwide awareness. Please be a part of a big weekend.

Tuesday, May 4, 2010

As We Give Thanks This Advocacy Day


I have a feeling that at the upcoming conference we'll hear much about the millions of dollars for DOD research that has been raised through advocacy efforts and the millions of dollars raised for the yet-not-delivered National ALS Registry. We are thankful.

But perhaps the most significant legislative victory that I'm thankful for in the last year is the biotechnology patent protection that was included in the healthcare reform package. We can disagree all we want on healthcare, but this nugget included in the legislation will give medical research huge incentives to invest in the expensive world of new biotech therapies.


For that, I'll be thanking every legislator. Those both for and against the healthcare package had a hand in getting the biotech patent protection. We are thankful. Not big-turkey-dinner thankful, but Miss-Broiler-chicken-leg thankful.
Until ALS is cured, we can't afford to bask in big-turkey-dinner thankful. There is still so much to do.

Monday, May 3, 2010

Get Your Lucky-Number Programs Here!

Well, maybe no lucky numbers, but here is a document that has pulled together all of the ALS advocacy activities that we're aware of next week in Washington.

Click here to print or download the pdf.

If you notice any errors or omissions, I'm all ears.

Sunday, May 2, 2010

This is Big (Edgy and Big)

If you are attending any of the ALS advocacy activities in Washington, DC, the week of May 9, please plan to be a part of a very visible display of the disease that steals our loved ones Piece by Piece. For many years the advocates have been holed up in their hotel meeting rooms and then scatter for a day on Capitol Hill. This year there will be a visible presence in very public places to make those who work and play in our nation's capital aware of ALS. It's edgy. It will be memorable.

The trailer hauling the display from Florida to Washington is even a rolling billboard.

If you know people who live in the Washington area, please ask them to stop by.
At the Navy Memorial (halfway between the White House and the Capitol Building directly on Pennsylvania Avenue, directly across the street from the National Archives)
Sunday, May 9, Mothers' Day
9 am - 5 pm

At the Capitol Reflecting Pool Plaza (on the west side of the Capitol Building)
Tuesday, May 11, Advocacy Day on The Hill
10:30 am - 6:30 pm


Those calling on legislators on Tuesday, May 11, are encouraged to invite elected officials and their staff members to stop by the display for a compelling lesson in the thief we call ALS. It will be a very short walk from all of their office buildings on Capitol Hill (and after seeing the display, being able to take a short walk should no longer be taken for granted).
Legislative staffs and media should not hesitate to contact Kamden, kkuhn@alsafl.org 813-637-9000, for information.
Here's hoping that this finally brings some national resolve to stop the wicked thief. Be there or be square.