Sunday, February 27, 2011
Thursday, February 24, 2011
Here is the short subject, "I'm Still With You" --
The articles and even the ads are informative, and every issue touches some aspects of ALS.
It's worthwhile reading, and it's proof that sometimes the best things in life are free (including the print edition).
Enjoy. Thanks, American Academy of Neurology, from many of us interested in ALS.
Tuesday, February 22, 2011
...and there may be even better ways...
Thursday, February 17, 2011
H.R. 1 proposes cuts to public health programs which affect the health of millions of Americans. The cuts to HHS agencies in the House 2011 budget proposal would remove $1.6 billion from the NIH; $755 million from the CDC; $50 million from the Maternal and Child Health Block; $400 million from the National Science Foundation; and $222 million from the FDA.
If enacted, this budget cut will result in job losses, slow down the progress towards finding much-needed new therapies, and harm the United States’ global edge within the biomedical field.
Friday, February 11, 2011
Thursday, February 10, 2011
@ALSadvocacy tweeted back that we need some ALS success charts in the next chart pack.
Today @PhRma tweeted back with a link to this gracious response --
These exchanges are watched by tens of thousands of people who see the tweets and the retweets. Many important people were reminded about ALS today.
Tuesday, February 8, 2011
It's well worth a click and a read for many reasons.
Monday, February 7, 2011
The ALS Association is pleased to announce that online registration for the 2011 National ALS Advocacy Day and Public Policy Conference will open at 11:00am (EST) on Monday February 7, and will be available on The Association's website at www.alsa.org/policy/alsday.cfm.
An electronic copy of the 2011 conference registration brochure also will be available on the site and can be found here. The brochure includes a detailed schedule of events for this year's conference, which takes place in Washington, DC May 8-10. Hotel information and details on registration fees, including Sunday only fees, early bird registration deadlines and how to reserve an ADA accessible hotel room, also can be found in the brochure.
Please note that in order to request an ADA accessible hotel room, attendees must contact Mary Wisniewski, event planner for the conference, at email@example.com or by phone at 202-746-0043 (please note this new email address). ADA room reservations open at 11am EST on Monday, February 7. As always, The ALS Association waives conference registration fees for all people with ALS and a caregiver traveling with them to Washington, DC.
The Advocacy Conference has played a major role in advancing the fight for a treatment and cure, inlcuding helping to secure $580 million in government funding for ALS research and vital Medicare benefits and benefits for military veterans and their survivors. Equally important, the conference empowers people with ALS and their families with the ability to fight back in the war against ALS. Click here to learn more about this year’s exciting conference. We hope you will join us this May as we continue to create the roadmap that will lead to a treatment and cure for ALS.
If you have any questions about the 2011 conference, please contact us at firstname.lastname@example.org or toll-free at 1-877-444-ALSA.
Saturday, February 5, 2011
Tony Proudfoot (CFL)
Let's remind everyone of the important facts about the high number of football veterans with ALS. It's a concern. Is it a clue? We spend millions of dollars on food and tickets and advertising and corporate hospitality this weekend. We need to spend some on ALS research to get to the bottom of this disease, too. We need to fight it as fiercely as we want the Packers and the Steelers to fight it out on Superbowl Sunday. It's much more than a game.
Kevin Turner, a bruising fullback who spent nine seasons with the Philadelphia Eagles and New England Patriots, spends a lot of time thinking about his life - or more accurately the life he has left after being diagnosed with amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease.
A recent study has linked ALS to brain trauma with NFL players having an eight times higher risk of contracting the disease.
"In 1997 on a kickoff I took a hit to the head and found myself asking a team mate are we in Green Bay or Philly," said Turner. "I played the whole time but I can't recall ever getting treatment and I practiced and played next week.
"We need to start taking those things seriously and treating the most important organ in your body like we do our knees."
Friday, February 4, 2011
So I asked about the proceedings --
Are any proceedings from the November 3, 2010 ATSDR ALS Surveillance Meeting available to the public? Thank you for any information.
And I got this reply --
Thank you for your interest and support of the National ALS Registry. The 2010 ALS Annual Meeting Summary Report is not available to the public at this time. Once the report has been finalized and approved it will be posted on the ALS Registry website. We anticipate it being completed by late spring or early fall.
If you find that you need further assistance, please feel free to contact the National ALS Registry System Administrator toll-free number at 1-877-442-9719 or email the National Registry System Administrator at ALSSystemAdmin@cdc.gov (9am-6pm ET).