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The Time Has Come to Pass the ALS Registry Act!
We have great news…the Senate is expected to vote on legislation that includes the ALS Registry Act as soon as this week! This is what we all have been working for. And it means that it’s absolutely critical that you contact your Senators and urge them to join us in our fight for a treatment and cure.
Late yesterday, Senate Majority Leader Harry Reid introduced the Advancing America’s Priorities Act (S. 3297). The bill includes the ALS Registry Act as well as other legislation that has been blocked from consideration by Senator Tom Coburn. For the past several months, we have worked closely with Senator Reid behind the scenes to move the bill forward and now we have an opportunity to take the next step and pass the ALS Registry Act in the Senate!
This is the opportunity we have been working toward. And it may be our last and only chance to pass the bill this year, so we need your help TODAY.
A sample letter you can send to your Senators is available on the Advocacy Action Center (http://capwiz.com/alsa/home/) of our website. Please send the letter today and ask your Senators to vote for S. 3297, the Advancing
And please remember, only contact the Senators representing your state, for Senators are most responsive to their own constituents. If you don’t know the names of your Senators, don’t worry, the Advocacy Action Center will identify them for you.
After you send your letter, please forward this alert to your entire address book and tell your family, friends and colleagues to do so as well. We need as many people as possible to contact their Senators in support of S. 3297.
We will keep you up-to-date as the bill moves forward and the vote is scheduled. So please keep an eye out for our Action Alerts. We anticipate that several votes may take place and we will be asking you to reach out to your Senators before every vote!
We want to thank everyone in advance for their outreach. Together, we can pass the ALS Registry Act!
If you have any questions or would like additional information about this Action Alert, please contact the Advocacy Department at firstname.lastname@example.org or toll-free at 1-877-444-ALSA.
When considering a modified vehicle, the best choice for a PALS would be to invest in one in which the PALS can remain in a wheelchair while riding in the vehicle.
Purchasing an already modified, used vehicle is a good way to save money over customizing a new one. A good source for locating a used modified vehicle is www.disableddealer.com (888-651-0666). You can sign up onto their mailing list to get the magazine’s listing for vehicles as well as other used items for people with disabilities.
Another resource is companies that actually do modifications to vehicles. They often have used vehicles available on their lots. To find a local dealer in your area, go to www.nmeda.org, click on “Member Directory,” then click on “
A relatively new lease program might also be beneficial to PALS. The program, offered by Caraleasing, Inc., has long and short term leases, as well as an early cancellation option. (1-800-995-9123.)
Ride-Away, also has financing options that would be beneficial to a PALS. They offer a buy back program when the van is no longer needed and they also have used vehicles for sale. (1-888-743-3292)
At the ALS Association of Greater New York we have a van loan program but with only a few vans in rotation, it could be months or years before someone can get one through the program. Remember, the ALS Association Greater New York Chapter does not endorse any of the above companies or services, we merely present them as options for PALS.
For specific questions about vehicle modifications contact Assistive Technology Specialist, Antoinette Verdone, 212-720-3054 or email@example.com.
Assistive Technology Internships are available through the ITP program at NYU.
Last year we began a partnership with the ITP program at NYU to host assistive technology interns. ITP graduate program students work on projects with us to find innovative solutions to problems. Internships start in the Fall Semester.
If you have ideas for future projects for our Assistive Technology Internship program please email us at firstname.lastname@example.org or call 212-720-3054. As always, we welcome and encourage your feedback.
GEORGE M. STEINBRENNER III
“Bobby Murcer was a born Yankee, a great guy, very well-liked and a true friend of mine. I extend my deepest sympathies to his wife Kay, their children and grandchildren. I will really miss the guy.”
YANKEES PLAYER (1996-99) AND CURRENT YANKEES MANAGER
“He was a great Yankee, but more importantly, he was a great friend to all of us. He always put others first, he cared about the game, and he cared whether we won or lost every day. He wore his emotions on his sleeve, whether he was in the booth or as a player, and he played the game the right way. Bobby was the type of man that, I believe, got what life was about — trying to make life better for people around him. As a kid, I used to watch Bobby Murcer, and he was one of my heroes.”
FORMER TEAMMATE, YANKEES OUTFIELDER (1977-81), MEMBER OF YANKEES SPECIAL ADVISORY GROUP
“If there’s a Hall of Fame for people, he’s in it. He enjoyed life, his family and people. He was such a good person, and he was appreciative of the people who cared so much for him.”
FORMER TEAMMATE, YANKEES PITCHER (1978-83, ’89), BASEBALL HALL OF FAME CLASS OF 2008
“He was an awesome person. His values and the way he lived his life were tremendous. He was a gentleman, a class act and friendly to everyone. He was the model of how we should all be.”
FORMER YANKEES FIRST BASEMAN (1982-95) AND YANKEES COACH (2004-07)
“Bobby is so special to me. I feel like he and I are connected. He’s the one that stepped down so graciously to give me my opportunity with the club. Anytime I think of the Yankees, and it’s often, I think of Bobby. Over the years, I’ve had the opportunity to know Bobby, and he’s a special person. He’s been a great joy in my life.”
FORMER YANKEES MANAGER (1996-2007)
“It’s a great loss to the baseball world and to those who had the great pleasure of knowing Bobby the person. He was a special human being with great spirit, and I know that helped him during this time. My deepest sympathies go out to Kay and the entire Murcer family.”
FORMER TEAMMATE, YANKEES PITCHER (1964-74) AND YANKEES COACH (1996-2005)
“The loss of Bobby is a major blow to those of us who played alongside him and considered him a friend. He was a special person, and I’ll always treasure the time I spent with him. He and [his wife] Kay were classy people, and our families have bonded throughout the years.”
BOB WATSON FORMER TEAMMATE, YANKEES FIRST BASEMAN (1980-82), CURRENT MAJOR LEAGUE BASEBALL VICE PRESIDENT OF ON-FIELD OPERATIONS
“For me, Bobby was the ultimate Yankee, a great player and a great friend. He was my locker neighbor for three years and we talked about anything and everything. The Yankees family is going to miss him.”
FORMER TEAMMATE, YANKEES OUTFIELDER (1974-84) AND YANKEES MANAGER (1986-87, ’88)
“Bobby Murcer was a tremendously special person. He was a wonderful family man, a supportive teammate and a great friend. Anita and I send our heartfelt wishes to Kay and the entire Murcer family.”
FORMER YANKEES COACH (1983, 1986, 1996-2003)
“Bobby was a Yankee in every sense, a true Yankee. A class act. He was the type of person that was loved by everybody. He battled this thing and never gave up. My thoughts and prayers go out to his family.”
Bobby Murcer: May 20, 1946 – July 12, 2008
In an article titled “Gene map charts spinal cord mysteries” in the Health section of the msnbc website written by science editor, Alan Boyle it is revealed that an online atlas of genes linked to spinal cord functions in mice may shed some light for research into new treatments for diseases like ALS. Paul Allen, Microsoft billionaire and other contributors backed the “Allen Spinal Cord Atlas” whose first pages were unveiled recently.
When the full data is revealed it will provide a valuable resource.