Saturday, November 27, 2010
Wednesday, November 24, 2010
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.
Wednesday, November 17, 2010
Tuesday, November 16, 2010
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
Sunday, November 7, 2010
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.
Saturday, November 6, 2010
Wednesday, November 3, 2010
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
Here are two old postings from ALSadvocacy with some thoughts for your consideration in hopes of making your letters more likely to be published.
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.