Tuesday, March 31, 2009
Former Owl linebacker O.J. Brigance will be honored by the athletics department, the R Association and members of the football teams from 1987-91 on April 18 at Rice Stadium.
Brigance, the Baltimore Ravens’ director of player development, was diagnosed with amyotrophic lateral sclerosis (ALS), a motor neuron disease, in 2007.
The “Celebration of Courage” at Rice will recognize Brigance’s accomplishments and raise money to fund an endowed scholarship in his name, support the annual designation of the Brigance Courage Award and provide a financial contribution to the Brigance Brigade to support its efforts to promote ALS research and education.
For more information, go to RiceOwls.com or contact Judith Duvall (firstname.lastname@example.org, 713-348-6935).
Monday, March 30, 2009
Great segment on the Today Show today!
Sunday, March 29, 2009
It almost sounds like a Dynavox informercial is planned, but we'll take what we get when a national ALS spokesman can be on network television.
Here's hoping it happens and there's a big audience that can learn something about ALS while learning about augmentative communication.
All these years later there are talented people tripping or having trouble gripping things or slurring consonants while they and others around them wonder what's wrong.
Thursday, March 26, 2009
We need your help TODAY to continue funding for the national ALS patient registry. U.S. Representatives Eliot Engel (D-NY) and Lee Terry (R-NE) are circulating a letter requesting the House Appropriations Committee provide $5 million in funding for the national ALS Registry next year. We urge you to contact your Representatives today to request that they sign onto this critical letter and support their constituents in the fight for a treatment and cure for Lou Gehrig's Disease.
The text of the Engel-Terry "Dear Colleague" letter is available by clicking here.
Representatives Engel and Terry have set a deadline of next Wednesday, April 1 for signing onto the letter. So please contact your Representative TODAY! A sample letter you can email to your Representative is available in the Advocacy Action Center of our website here: http://capwiz.com/alsa/home/.
It is essential that your Representative knows how important the registry is to the ALS community in your state. They need to know that the ALS registry can help us find what causes ALS, how it can be treated or even prevented from occurring in the first place. They need to know that the registry can save lives.
The ALS Association and advocates across the country have worked tirelessly to establish a national ALS registry at the Centers for Disease Control and Prevention. The registry will identify how many people are living with ALS in the country, and also collect information about the disease that is urgently needed to advance ALS research.
Thanks to the ALS community's efforts, we successfully enacted the ALS Registry Act last year to authorize this important project. And we have worked with Congress to secure funding to launch ALS registry pilot projects, including $5 million in the current year. However, much more needs to be done in order to continue the registry, build on the work underway and to enable the registry to begin collecting information on a broader scale.
While Congress has supported us in the past, there are many other programs competing for scarce dollars, and the current economic climate poses additional challenges to securing continued funding. Therefore, it is vital that you contact Congress TODAY. And tell your family, friends, and colleagues to do the same. With a deadline of next Wednesday for signing onto the Engel-Terry letter, the time to act is NOW.
If you have any questions or would like assistance reaching out to your Representative, please contact us at email@example.com or toll-free at 1-877-444-ALSA.
Wednesday, March 25, 2009
Schilling’s blessing a match for any curse
By Jan Delaney Wednesday, March 25, 2009 http://www.bostonherald.com Op-Ed
Curt Schilling’s retirement has prompted many fans and columnists to write about his impact on the Red Sox [team stats]. How one man came to town with a promise to break a curse.I remember the commercials where Schilling was hitchhiking out of the desert on his way to Boston and then sitting in the clubhouse trying to perfect our verbal eccentricities like “pahk the cah.” He was great. He brought to town an attitude and so many of us jumped on his bandwagon.But there was one other thing that Schilling brought with him.
In 2004 my husband, the late Fran Delaney, was facing the challenge of Amyotrophic Lateral Sclerosis. Also known as Lou Gehrig’s Disease, ALS had begun to ravage him a few years earlier and was getting worse each day.A lifelong Red Sox fan, my husband watched every game, his mood swinging with the ups and downs of his beloved team.Schilling brought magic to our lives. He had committed himself to the cause of raising money and awareness for research of this terrible disease. He and his wife backed up that effort with appearances at fundraisers, setting an example for other athletes on how to use their celebrity power for some greater good.Throughout the season, Fran watched Schilling. He loved the pitcher’s work ethic, his competitiveness, his commitment to winning.
Then the playoffs arrived and Schilling’s ankle was a problem. So what did Schilling do about this? Did he throw up his hands and let the job fall to others? Did he worry about his long-term health?Not Schilling. He had experimental surgery on his ankle, performed in the bowels of Fenway Park [map]. He went out and pitched an ace of a game and he highlighted his campaign against Lou Gehrig’s Disease by writing “K ALS” on his cleats, knowing that the national spotlight would shine directly on him.The Red Sox won the World Series and the curse was broken. Three years later, they won it again. This is the stuff of legends.Curt Schilling [stats]’s career on the field should bring him to the Baseball Hall of Fame.
His work off the field certainly qualifies him for the Humanity Hall of Fame.
Tuesday, March 24, 2009
It sure seems like law professors with ALS can make a lot happen.
Perhaps Professor Steven Gey should meet Professor Michael Goldsmith.
A new coalition of medical researchers, academic professionals, labor and business groups, and others last week launched the Council for American Medical Innovation — a working partnership dedicated to urge Congress to adopt an agenda to spur innovation and discoveries in the life sciences.
"American leadership in medical innovation must be part of our economic recovery plan," said former House Democrat Rep. Dick Gephardt, who helped form the group. "It has a direct impact on job growth, U.S. competitiveness and the health of all Americans."
A study released last month by the Information Technology and Innovation Foundation (ITIF) found that while the United States currently ranks sixth among 40 countries and regions in innovation and competitiveness, it placed last in terms of progress made over the last decade. Singapore, Sweden, Luxembourg, Denmark and South Korea now outrank the U.S.
Members of the Council include: AdvaMed, the ALS (Lou Gehrig's Disease) Association, American Society for Therapeutic Radiology and Oncology, American Academy for Child and Adolescent Psychiatry, Association of Clinical Research Organizations, the Cleveland Clinic, the National Health Council, the National Organization for Rare Disorders, the Parkinson´s Action Network, RetireSafe and the Whitman-Walker Clinic.
Thanks to Rob Borsellino, both Iowa Senators mentioned in the article have seen the vitality and talent that ALS steals from us every day.
Monday, March 23, 2009
Thursday, March 19, 2009
Thanks to all who spoke up!
There is also a feature in this morning's Wall Street Journal.
Google "competitive bidding Medicare" and see the items related to durable medical equipment dated 2009.
Please read up on the issue and express your opinions to those who were elected to spend taxpayers' money wisely. Cheapest isn't always least expensive when you're dealing with ALS.
Wednesday, March 18, 2009
Here is the explanation and the stance of the American Legion.
WASHINGTON, DC (March 16, 2009) – The leader of the nation’s largest veterans organization says he is “deeply disappointed and concerned” after a meeting with President Obama today to discuss a proposal to force private insurance companies to pay for the treatment of military veterans who have suffered service-connected disabilities and injuries. The Obama administration recently revealed a plan to require private insurance carriers to reimburse the Department of Veterans Affairs (VA) in such cases.
“It became apparent during our discussion today that the President intends to move forward with this unreasonable plan,” said Commander David K. Rehbein of The American Legion. “He says he is looking to generate $540-million by this method, but refused to hear arguments about the moral and government-avowed obligations that would be compromised by it.”
This would appear to be a crucial issue for the thousands of veterans dealing with ALS. Please read the entire item on the American Legion site and google on the issue to become informed so that you might communicate your opinions.
Tuesday, March 17, 2009
From the ALSTDI forum --
Hello, We got word that the appearance of Augie Nieto, Chairman of ALS TDI, on NBC's TODAY Show originally schedule for tomorrow (March 18) has been postponed. We apologize for the late notice and will post an updated date and time in the ALS Forum. Best, Rob
Robert A. Goldstein
Director of Communications
ALS Therapy Development Institute www.als.net
Be sure to watch NBC’s TODAY Show on Wednesday March 18th between 8:00-9:00AM (EST)
Augie Nieto, Chairman of the Board at ALS TDI and the Chief Inspirational Officer of Augie’s Quest, will appear in a segment highlighting the tools he uses to stay connected.Augie uses the DynaVox EyeMax, an eye gaze system which allows him to use his eyes to speak, send email, watch TV, and operate his computer. The segment is expected to show how people of all ages with multiple disabilities can use augmentative and alternative communication (AAC) to improve their lives and the lives of those around them.At the end of 2008, Troy Jurgensen made a presentation as part of the ALS TDI Leadership Summit in Boston, Mass. during which he demonstrated a number of different communication tools being utilized by ALS patients. Some of them, such as the DynaVox EyeMax, and a freeware program called "Dasher" are available today. To watch a recorded video of Troy's presentation, click here.
Don't Miss Augie on the Today Show! Check your local listing
for channel information. The segment will be available afterwards on the TODAY
Show's website by clicking here.
The Hinkle brothers and Nash titled their event as "Eight hours with ALS” and kept silent all day as a symbol of the disease that robbed Vance Hinkle’s ability to speak.
“I was sitting in my service learning class and my teacher, said we should do something radical to raise awareness and funding,” Blake Hinkle typed out on the “Dynowrite,” a communication device provided by the ALS Association Northern Ohio Chapter. “The day after my dad died I was at a friend’s house and we thought of this idea, ‘Eight hours with ALS,’ to raise awareness.”
These students rock. We need for them and their bright minds to stay engaged with the cause!
Monday, March 16, 2009
This year when the 4 ALS campaign from MLB will bring Lou Gehrig's farewell speech back to millions of Americans on July 4, why not get in the spirit of things and give the DVD of "The Pride Of The Yankees" to your friends and relatives and coworkers and neighbors?
It's a corny, old movie that makes perfect family fare as baseball season begins.
Sunday, March 15, 2009
We should sear ALS into our memories when we think of his photography.
The Nationals have announced a series of monthly health initiatives this season designed to improve the quality of life in the metropolitan area.
It's sadly appropriate, and no accident, that neurological disorders will be the designated disease for July. It was in that month 70 years ago that Yankees immortal Lou Gehrig - dying in his 30s from amyotrophic lateral sclerosis - uttered perhaps the most melancholy and memorable words in baseball history: "Today I consider myself the luckiest man on the face of the Earth." Representatives of each health organization will either throw out a ceremonial first pitch or deliver the starting lineup to home plate sometime each month.
Here's the contact information for the Washington Nationals. Let's let them know that this is a once-in-a-lifetime opportunity to do something really important for Lou Gehrig's Disease.
The Obamas have made it a point to be a part of the DC community. Let's let them know that the President of the United States has a wonderful opportunity to do something very special with his home team for the tens of thousands of Americans dealing with ALS.
Saturday, March 14, 2009
If only more alumni magazines would have such informative articles featuring their outstanding graduates who battle ALS.
Friday, March 13, 2009
From Terry Teachout, Arts Writer for the Wall Street Journal --
... I regret to say that it's not very good. Nor does Ms. Fonda make a strong impression in it, though she gives a thoroughly competent performance as Katherine Brandt, a brisk, emotionally distant musicologist who comes down with amyotrophic lateral sclerosis (the neurological disorder popularly known as Lou Gehrig's disease)...
But the last paragraph of the review was a grand finish, mentioning another bit of drama that had ALS in the story --
Even if "33 Variations" were a better play, it couldn't help but look pitifully puny next to an immortal monument of Western art that dwarfs anything short of "King Lear." To put it in perspective, would you want a full-size copy of "The Last Supper" hanging on the upstage wall of the set on which you were performing "Tuesdays With Morrie"? No? Well, that's pretty much what Moisés Kaufman has done in "33 Variations," and it doesn't speak well for his modesty, much less his common sense.
You're dealing with a pitifully forgotten disease when it makes you so happy that a scathing review gets the disease in print in the national press.
Thursday, March 12, 2009
Rome - A retired Serie B footballer has said he contracted amyotrophic lateral sclerosis (ALS), a nervous-system disease with an unusually high incidence among former Italian players. Italian media reported Thursday that Stefano Turchi, 40, a forward with Ancona between 1990 and 1992 has suffered from ALS since 2005.
Researchers studying ALS have found that the incidence of the disease among footballers is about 18 times higher than among the general Italian population. Some 40 former footballers have been diagnosed with ALS in recent years, although it remains unclear what may have caused their illness.
Tuesday, March 10, 2009
It appears that the $410 billion spending omnibus act passed by the Senate tonight included $5 million for the ALS Registry and $2.5 million to fund the respite care act that was never funded.
Let's start counting noses and keeping track of their medical histories... and let's give some caregivers a chance to come up for air.
Perhaps an effective and dynamic registry for people with ALS would have made the whole Iplex dilemma a lot easier to solve. It is incredible that we have never started gathering medical and environmental data and outcomes for every case of ALS in our country, yet with a swipe of my Costco card , a cashier can look up how many pineapples we consumed last year.
The American Legion has supplied a lot of good information for us all (and especially for veterans) in this piece in their national magazine.
This would be a good month for local ALS organizations to contact American Legion Posts to find opportunities to spread the word and help the cause of veterans with ALS.
Saturday, March 7, 2009
Put your creative brains to work.
For example, at the ALS Advocacy Conference in May, what if every 90 minutes each participant were handed a wristband to remember the precious American life that was lost to ALS in that short time period? I'll bet you could find volunteers to leave bags of wristbands on hotel room doors for the six PALS lost while attendees were sleeping. Between the start of the conference on Sunday afternoon and the beginning to the appointments Tuesday on Capitol Hill, attendees would be sporting 28 wristbands. How would that be for a memorable conversation starter?
And perhaps some creative person could print up some fake lottery tickets showing the astronomical odds of hitting the Powerball drawing... along with the not-so-astronomical odds of hitting the ALS drawing. Those should get some attention if passed out on the street or in the halls of Congress. That would be the lottery ticket that nobody would want.
Here's Michael Goldsmith starting this whole MLB thing...
We owe him much. For major networks to pay him tribute (and at the same time continue to build ALS awareness) would be fitting. How many people will be surprised to find out on July 4 that Lou Gehrig's Disease hasn't been cured in all these years? We will owe Michael Goldsmith much for bringing that to the public in such a fitting setting as America's ballparks.
So... How about sending a message to Charlie and Brian and Katie today to clue them in on quite a talented and courageous PALS who knows how to get things done? We can all display a small spark of Michael Goldsmith by sending messages to those news outlets. Hundreds and thousands of suggestions will make the story rather compelling for them to feature.
Friday, March 6, 2009
Senator, You Can Have Your Pic Taken With Michael Waltrip or You Can Talk To These Nice People About Some Disease
Aftermarket Legislative Summit
We need to be more creative about how to get the attention of our legislators in Washington. They have these Michael Waltrip opportunities every day.
Check out the comment by ALS Grumpy.
Thursday, March 5, 2009
A few hundred folks in black Piece by Piece togs walking around DC in May should make an impression.
Shoot, a few thousand folks walking around anywhere should make quite an impression.
The White House Healthcare Summit is today. ALSadvocay has been googling for the attendee list without much luck. We hope that somebody there may be ALS-aware.
This would have been a grand day for a big gathering of PALS in Lafayette Park, perhaps.
It would be a refreshing change if the administration might value the opinions of people stuck with a killer disease that America has not addressed adequately.
Tuesday, March 3, 2009
There is not excuse to sit at home quietly this July 4. ALS TDI is ready to help you plan and promote ALS advocacy events for July 4. See the 4 ALS area at www.als.net
The perfect holiday -- Baseball, hot dogs, apple pie, and 4 ALS events and publicity!
Tuesday, March 3, 2009 8am - 5pm
This is an advocacy display that people will not forget!
The display is described quiet but riveting in this report
MDA Online Series Looking for CandidatesApplication deadline March 10
MDA’s “ALS: Anyone’s Life Story” campaign once again will be featured on its ALS Division Web site during national ALS Awareness Month this May.
This online series introduces individuals affected by ALS from across the nation, raising awareness of ALS by illustrating that it truly could be “Anyone’s Life Story.” MDA notifies local media whenever someone from their area is featured on the series, which often leads to additional media coverage.
A different individual will be featured each of the 31 days in May. To see those featured in 2008, visit the MDA ALS site (www.als-mda.org), click on Resources at the top, then Anyone’s Life Story.
Potential candidates for the series include people with ALS who are public speakers, leaders within local MDA support groups and outreach efforts, or anyone living with ALS who has an inspirational outlook on life.
If you’re interested in applying, contact your local MDA office by calling (800) 572-1717.
But hurry! The deadline for applications is March 10! Candidates must fill out a short questionnaire and provide a photo; call your local office for complete information.
PALS Michael Goldsmith threw out the big first pitch, but it's up to us all to knock the awareness ball out of the ballpark!
This is a refreshing, new concept for ALS -- national awareness with all of the major ALS charities joining voices with MLB to make a lot of noise. We need to make sure that our local ALS organizations get it. They snooze and we all lose.
In times when we need to get a shrinking economy to grow a little, what better spot for growth than in the good work that charitable organizations perform? We have a tax code that demands that 501(c)3 charities live by rules that give donors some assurances of their good stewardship. We have increasing social needs, and families dealing with ALS are a part of those needs. We have a tax code that has traditionally encouraged charitable generosity. We have a network charities that can perform many functions much more economically than if our government were forced to take over those functions.
So why would we want to change our tax code to make it less likely for a person of means to give generously to 501(c)3 charities?
Today be a good day to read Representative Blunt's statement and do some homework on the issue and speak up on behalf of 501(c) 3 charities that can stimulate the economy in healthy ways.
Monday, March 2, 2009
NIH's Role in the American Recovery and Reinvestment Act (ARRA)
NIH is well positioned to fund the best science in pursuit of improving the length and the quality of the lives of our citizens, while at the same time stimulating the economy. NIH conducts and supports outstanding biomedical and behavioral research, through more than 3,000 institutions across the country—institutions that have a direct impact upon the local economies in their towns, cities, and states.
The Recovery Act provides a total of $10.4 billion, all available for two years—through September 2010. We expect to spend as much as possible in FY 2009. Below is a summary:
$8.2 billion in support of scientific research priorities
$7.4 billion is transferred to the Institutes and Centers and Common Fund (CF), based on a percentage-based formula
$800 million to the Office of the Director (OD) (not including CF)(For example, support for Challenge Grants), a program designed to focus on health and science problems where progress can be expected in two years.
To support additional scientific research-related activities that also align with the overall purposes of the Act
$1 billion to support Extramural Construction, Repairs, and Alterations
Allocated to the National Center for Research Resources (NCRR) in support of all NIH funded research institutions
$300 million Shared Instrumentation and other capital equipment
Allocated to NCRR to support all NIH activities
$500 million for NIH buildings and facilities
To fund high priority repair, construction and improvement projects on NIH campuses that also align with the overall purpose of the Act
$400 million for Comparative Effectiveness Research (CER)
Many types of funding mechanisms will be supported, but, in general, NIH will focus scientific activities in several areas:
We will choose among recently peer reviewed, highly meritorious R01 and similar mechanisms capable of making significant advances with a two-year grant. R01 are projects proposed directly from scientists across the country. We will also fund new R01 applications that have a reasonable expectation of making progress in a two-year grant.
We will accelerate the tempo of ongoing science through targeted supplements to current grants. For example, we may competitively expand the scope of current research awards or supplement an existing award with additional support for infrastructure (e.g., equipment) that will be used in the two-year availability of these funds.
NIH anticipates supporting new types of activities that fit into the structure of the Recovery Act. It will support a reasonable number of awards to jump start the new NIH Challenge Grant program. This program is designed to focus on health and science problems where progress can be expected in two years. The number of awards and amount of funds will be determined, based on the scientific merit and the quality of applications.
NIH will also use other funding mechanisms, as appropriate.
NIH is working closely with the HHS Recovery Act Implementation team to ensure transparency and accountability for their Recovery Act funds. As NIH Spend Plans are approved through this process, NIH will post information about these critical projects and their impact on the economy on www.hhs.gov/recovery.
The impact is expected to extend beyond the immediate scientists who will receive funds, to allied health workers, technicians, students, trade workers and others who will receive the leveraged benefits. We understand to accomplish the goals of the Recovery and Reinvestment Act, it will take the help of the entire scientific community. Beyond the immediate economic stimulus, the long-term impact from the science funded by the Recovery Act will have a positive impact upon the health of the nation for years to come.
Sunday, March 1, 2009
From ZenArcher at alsmatters.org...
H.R. 1169 was introduced to the House on February 25th and referred to the House Committee of Veterans' Affairs. This bill if passed would increase the specially adapted housing (SAH) grant from $60,000 to $180,000 and the automobile grant from $11,000 to $33,000. Below is the full text of the bill.
To amend title 38, United States Code, to increase the amount of assistance provided by the Secretary of Veterans Affairs to disabled veterans for specially adapted housing and automobiles... (Introduced in House)
HR 1169 IH
H. R. 1169
To amend title 38, United States Code, to increase the amount of assistance provided by the Secretary of Veterans Affairs to disabled veterans for specially adapted housing and automobiles and adapted equipment.
IN THE HOUSE OF REPRESENTATIVES
February 25, 2009
Mr. BOOZMAN (for himself and Mr. BUYER) introduced the following bill; which was referred to the Committee on Veterans' Affairs
To amend title 38, United States Code, to increase the amount of assistance provided by the Secretary of Veterans Affairs to disabled veterans for specially adapted housing and automobiles and adapted equipment.
Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,
SECTION 1. INCREASE IN AMOUNT OF ASSISTANCE PROVIDED BY SECRETARY OF VETERANS AFFAIRS TO DISABLED VETERANS FOR SPECIALLY ADAPTED HOUSING AND AUTOMOBILES AND ADAPTED EQUIPMENT.
(a) Specially Adapted Housing- Section 2102 of title 38, United States Code, is amended--
(1) in subsection (b)(2), by striking `$12,000' and inserting `$36,000'; and
(2) in subsection (d)--
(A) in paragraph (1), by striking `$60,000' and inserting `$180,000'; and
(B) in paragraph (2), by striking `$12,000' and inserting `$36,000'.
(b) Automobiles and Adapted Equipment- Section 3902(a) of such title is amended by striking `$11,000' and inserting `$33,000'.
Please visit http://capwiz.com/alsa/home/ and ask your Representative to cosponsor H.R. 1169.
Everybody on Facebook, here you go...
Individuals and ALS organizations that have Facebook pages... your pages do no good if they're one-time projects that go fallow. Here's an opportunity to do something dynamic, effective, and visible with your Facebook presence. ...and surely somebody on the Sebelius staff will be watching the comments pouring in.
Everybody else, here's her contact page as governor... and she's still governor until she resigns that position, so email away...
Some things you might want to convey...
- The ALS Registry needs funding in order for it to happen. We'll never connect the dots if we don't start collecting the dots.
- ALS continues to kill and there is no known cause or cure.
- The outlook is much the same today as it was for Lou Gehrig in 1939.
- Americans can do better. Yes we can.
- Talk about change we need!