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.

Saturday, November 27, 2010

The Wall Street Journal Reports On A Man Who Did Something Jawdropping

http://online.wsj.com/article/SB10001424052748704638304575637332280726598.html?KEYWORDS=als

From the Wall Street Journal, November 27, 2010, by Shelly Banjo
"A Long Ride To Aid ALS Sufferers"

Chris Pendergast is a man with ALS who is a hero to the cause with his annual Ride for Life, and now he is the star of an article in the Wall Street Journal.

"I saw the pathetic amount of research and support for patients and immediately became an advocate," Mr. Pendergast says, speaking through a ventilator. "I needed to do something jaw-dropping to capture the attention and imagination of the public because no one was paying attention to this disease that was lingering in the background and painfully killing people."

Wednesday, November 24, 2010

Let's Really Redefine Christmas This Year

Please take a look at http://www.redefinechristmas.org/ . There are some wonderful messages there along with the tools to make Christmas count this year.

As you evaluate U.S. charities, please consider making donations (plural) to several ALS 501c3s.

Following are some for your consideration:
www.alsa.org and its independently funded local chapters such as www.alsafl.org and www.alsaindiana.org and...


www.wingsoverwallstreet.org
We who are able to donate need to make this more than an either-or choice. It's time that we raise the resource tides for multiple organizations involved in ALS research and patient services.

There would be no finer Christmas gift than to give a hand to several organizations searching for the cure and to several helping families deal with a disease that nobody should have to face at Christmas.

Let's redefine Christmas and let's redefine the way we are fighting ALS -- together!

Wednesday, November 17, 2010

Is It Not Time To "Go" To Washington In New Ways?

May will be here before we know it. Anyone who has participated in ALS Advocacy Day will tell you that those face-to-face encounters with legislative staff members make an impression. Anyone with ALS who has participated has gone through incredible hoops to get there, to navigate through the city, to use the rest rooms, to search for accessible entrances, and to make it through an exhausting day. Caregivers run themselves ragged. All spend a small fortune on transportation and hotels. Sometimes that investment of precious energy and money culminates in a five-minute meeting in a hallway with a staff member.

Envision this in 2011. One patient and one legislator in every state are selected to pilot something efficient and economical (two magic adjectives in the new Congress). A webcam is set up in the patient's home. The patient is ready to use whatever communication means works best for his or her situation. The patient has the talking points for the 2011 ALSA advocacy requests. The legislator has a staffer set up a webcam in the Senator or Congressperson's office. At the appointment time, the patient and caregiver can communicate with the legislator in an extremely efficient and cost-effective manner. The talking points are made. The approach is novel and will be remembered by the legislator and staff. The concept might even be nationally newsworthy!
This could complement the in-person participants beautifully. This could get the messages into offices that might otherwise have been hard to reach. This is not rocket science, but it sure would look that way in the halls of Congress.

It's time for some people to go to Washington in new and different ways. The first organization to pull this off will make the splash. Anybody ready for a big splash?

Tuesday, November 16, 2010

If She Can Work The Miracle Of A Successful Write-in Campaign...


...then perhaps she'll help us work the miracle of finding a cure for ALS.




I love it when there is a picture of a United States Senator wearing a red Strike Out ALS wristband in the Wall Street Journal!
We hope to see the best friend the cause has on Capitol Hill in May for Advocacy Day.

Ut-Oh!

http://www.telegram.com/article/20101110/NEWS/11100338/1237

NIH Fears Cuts In Research Funds
by Alex Wayne, Bloomberg News
WASHINGTON — Spending cuts proposed by the incoming House majority leader would reduce scientists’ chances of winning U.S. grants by almost half, demoralizing researchers and slowing drug development, the National Institutes of Health’s director said. Republicans taking control of the House next year would roll back funding to agencies including NIH to fiscal 2008 levels, according to a proposal by Rep. Eric Cantor, R-Va., who is likely to become the chamber’s majority leader. That would equate to a 4.3 percent, or $1.3 billion, cut to the agency’s $30.8 billion annual budget.

Thursday, November 11, 2010

Here Is A Stunning Ad


From the Alzheimer's Association in this morning's Wall Street Journal, page D2 --

"We'd show an Alzheimer's survivor here, if there were one."
0% survival.
6% the funding of cancer.
100% insane.


It's a stunning ad with a stunning message.
Where are the stunning messages regarding the other "A" disease -- ALS?
It's time to stun some people into stopping another insanity.

Sunday, November 7, 2010

What If They Held A Census And Nobody Came?


Statisticians can do amazing things. We saw that last week when elections were called fairly accurately within minutes of polls closing. For some things though, no amount of statistical magic can substitute for an old-fashioned count of noses. This is the case with ALS.

ALS advocates finally obtained the permission of the United States along with the funding to make such a census happen. This census has been named the U.S. ALS National Registry. It started counting noses a few weeks ago.

If you have ALS, please go to the CDC (an agency of the United States Government) website and have your nose counted by "joining the ALS registry." https://wwwn.cdc.gov/als/Default.aspx

Until all people with ALS join the registry, you will be cursed with both low estimates of how many people have ALS and a lack of data to prove what environmental factors might play a part in ALS.

If you have ALS, please enroll. If you know anyone with ALS, please urge him or her to enroll.

I buried a loved one to ALS and the clues that her medical and life history contained were buried with her. That need not happen ever again.


Wednesday, November 3, 2010

When The ALS Clock Is Ticking, Five Months Can Be The Better Part Of A Lifetime

The following was posted on an ALS patient message board a few days ago:

I've been spearheading a push to see if we can get the 5 months waiting period change when you apply for social security disability. The law reads you must wait 5 full calendar months before you receive your first disability check. I've been working hard with Senator Cathy Young and US Senator Charles Schumer. This has been 6 months worth of meetings, phone calls, etc. Please help all PALS by writing a letter to help support this change. ANYONE, can write a letter. We are asking all letters be done by November 12th.

I'm sure I'm not the only one who has been financially ruined because of this wait time experience? Any others with the same issues? Because we are a working middle class family, we are not eligible for any other type of support or asistance with anything. My husband has a job, I was the bigger paycheck, but his paycheck doesn't make up for the loss of my income, not even close. One place we went to for help told us to have my husband quit his job, then they could help us!!! How insane is that?
Here is the e-mail address to support this change:
Laura_Monte@Schumer.Senate.gov or mail to Laura Monte, 130 South Elmwood Ave. Buffalo, NY 14202. Please put in the subject line of the e-mail: Wait time for SSD.

A sample letter is on my facebook page, Deb McQueen Quinn, just print it out and sign it and drop it in the mail or copy and paste and send by e-mail. Letters, the more the better, must go to the healthcare advisor and they will do the research on SSD and then make a determination if they find just cause to move ahead to introduce a new law. If not, we will get a letter back explaining why not. I did the sample letter, provided my issues over the last 6 months during the wait time and also included my Familial ALS history. If you don't feel you want to send it to Senator Schumer, please send it to your local Senator, but, the power is in numbers and he is on our side and all ready understands where I'm coming from on this issue. IF we make it far enough, Schumer will ask for some of us to come to DC for congressional hearings on this matter. Hope.....mine is still with me!

Tuesday, November 2, 2010

Letter Campaign - Take III

ALSA is again promoting a letter-to-the-editor campaign for Veterans' Day.

Here are two old postings from ALSadvocacy with some thoughts for your consideration in hopes of making your letters more likely to be published.

http://als-advocacy.blogspot.com/2009/11/gonna-sit-right-down-and-write-myself.html

http://als-advocacy.blogspot.com/2008/10/alsa-letter-campaign-for-veterans-day.html

Before you take the plunge and use the tools at http://alsa.capwiz.com/alsa/home/, I urge to to consider the thoughts at those links above and to google "guidelines letter to editor" and look at the guidelines at major publications.