Tuesday, October 20, 2009
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.
Thursday, October 15, 2009
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.
Wednesday, October 14, 2009
Monday, October 12, 2009
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.
Tony Proudfoot (CFL)
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
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 firstname.lastname@example.org or toll-free at 1-877-444-ALSA.
Monday, October 5, 2009
By Rita Rubin, USA TODAYTwo 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.
Thursday, October 1, 2009
...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.
...and if you tweet, follow @tweetforals