ferncohen.com
As researchers and scientists across the country [and worldwide] to find a cure, or even more effective treatments, for ALS/Lou Gehrig’s Disease, it was announced that the United States Senate passed the ALS Registry Act, which will develop a system to collect data and establish a national registry on ALS/Lou Gehrig’s Disease, and other motor neuron disorders. These neuromuscular diseases are often confused for other disorders like Multiple Sclerosis, Parkinson's, spinal-cord damage and other conditions. In fact, there have been numrous cases where patients with misdiagnosed ALS have gone through the wrong treatments for years, or unnecessary surgery, before finding they had ALS. The bill passed the Senate HELP and House Energy and Commerce committees by unanimous vote in 2007 and recently passed the House. After yesterday’s Senate passage by unanimous consent, the bill will now go to the President’s desk. New York State Senator Charles Schumer is a co-sponsor of the Senate bill.
What does this mean for ALS patients?
It means that scientists and researchers are one step closer to finding a cure for ALS, which is currently incurable, with treatment limited to medications that alleviate symptoms. The national registry will help identify the incidence of ALS in the United States by collecting the data which will identify patterns and commonalities. These findings will improve ALS research, management and treatment. This legislation will significantly augment the nation’s efforts to find a cure for ALS.
If anybody remembers my blog entries from May, 2007, a delegation of PALS, CALS, and family members of people with ALS went to Washington DC to lobby for the passage ofthis bill, so I am proud to have been part of that.
Showing posts with label senate. Show all posts
Showing posts with label senate. Show all posts
Thursday, September 25, 2008
Sunday, June 3, 2007
DC Advocacy Days 2 and 3
DC Advocacy Days 2 and 3
So Tuesday was kind of preparation for The Hill. First, we attended a meeting about what to expect. I could tell from the talk that, as I expected, DC Advocacy was going to be big and impressive. After the prep meeting, there was another seminar on recent advances in research. Of course, the topic of stem cells came up. As I suspected, stem-cell research is our biggest hope for a cure and/or better treatments.
On Tuesday evening, we attended an awards presentation at the historic Carnegie Library. There was also a reception with a baseball-park theme. Each section of the buffet was divided into regions, and typical ballpark food was displayed, including regional specialties. So, among the hotdogs and French fries, were pizza for New York, cheesesteak sandwiches for Philadelphia, and nachos and fried churros for San Diego, and clam chowder for Boston. And hostesses passed through with baskets full of bags of Cracker Jacks, and Baby Ruth candy bars. It was a lot of fun.
Wednesday morning we woke up at 5:00am, for the day on The Hill. After breakfast at the host hotel, the Renaissance, we boarded buses for the buildings where the senators and Representatives have their offices.
There was a lot of walking, or rolling in my case, from one building to another. Our first stop was the Cannon Building to meer Carolyn McCarthy from the Fourth Congressional District on Long Island. Even though I do not live in her district, my family does, and of course, her district is where I am from. McCarthy’s rise to Congress was out of a tragic story, one that was a big part of our history here.
On December 7, 1993, as a Long Island Railroad train full of commuters from Manhattan, pulled into the Merillon Avenue station in Garden City, a crazed gunman by the name of Colin Ferguson opened fire in one of the cars. Two of his 25 victims were Dennis McCarthy and his son Kevin. Dennis was killed, along with five others; Kevin was one of 19 injured. As a result of her husband’s murder and son’s severe injuries, Carolyn, then a nurse, became an activist for gun control. Thereafter, she ran for Congress, and there she still sits.
She greeted us very enthusiastically, and listened to our presentation, including my story that I had pre-typed and saved in my Mercury speaking device. We took pictures, which she promised to send us. I told her what an inspiration she has been, and she told me how inspired she was by my presence in her office. As a followup, I contributed an entry on Metroblog NYC called “Carolyn McCarthy Rocks!” and somehow it came to the attention of Peter Kay, her Legislative Assistant, and he e-mailed to thank me. He said McCarthy was “tickled” to read my article!
Then, we were off to see Anthony Weiner, the Representative from my, and Louise’s district. Weiner is one of the sponsors of the ALS Registry Bill, which he quickly reminded us of while he whizzed by in the hall. We got to do our presentation to Weiner’s aide, and also to the aides of Hillary Clinton and Chuck Schumer, our two senators.
We were pretty exhausted by the time we arrived at Union Station for our 7:10 train.
Ellita and I had some dinner, and we boarded the train with Jody and Maria. We had an Access-a-Ride pickup scheduled for 10:21 at Penn Station – well in line with our scheduled arrival of 9:45. Well, as luck would have it, our train met with a mishap; sometime after Philadelphia, we smelled a fire. Some debris on the tracks caught fire and our train was badly delayed. We then knew we were going to lose Access-a-ride! So Jody used her power of “ big mouth” and requested that they send another van. Of course they wouldn’t confirm it to us. Long story short: I got to Penn Station, sent Ellita home in a taxi, while Jody and Maria Castronovo waited with me until Lynette arrived from my house in a taxi. I had no idea that taxis had gotten so expensive! Just ten years ago, I took taxis from Manhattan to Queens for under $20 and now they are more than $40!! Lynette arrived at Penn at 11:45, and we received a confirmed time for Access-a-Ride pickup of 1:00am. They arrived at 1:15, home at 1:45, to bed at 2:15am. I don’t think I need to say how exhausted I was the next day, but it was all worth it, and I can’t wait to do it again.
NEXT UP: Fern’s Fighters, Talking Machine battles, etc.
So Tuesday was kind of preparation for The Hill. First, we attended a meeting about what to expect. I could tell from the talk that, as I expected, DC Advocacy was going to be big and impressive. After the prep meeting, there was another seminar on recent advances in research. Of course, the topic of stem cells came up. As I suspected, stem-cell research is our biggest hope for a cure and/or better treatments.
On Tuesday evening, we attended an awards presentation at the historic Carnegie Library. There was also a reception with a baseball-park theme. Each section of the buffet was divided into regions, and typical ballpark food was displayed, including regional specialties. So, among the hotdogs and French fries, were pizza for New York, cheesesteak sandwiches for Philadelphia, and nachos and fried churros for San Diego, and clam chowder for Boston. And hostesses passed through with baskets full of bags of Cracker Jacks, and Baby Ruth candy bars. It was a lot of fun.
Wednesday morning we woke up at 5:00am, for the day on The Hill. After breakfast at the host hotel, the Renaissance, we boarded buses for the buildings where the senators and Representatives have their offices.
There was a lot of walking, or rolling in my case, from one building to another. Our first stop was the Cannon Building to meer Carolyn McCarthy from the Fourth Congressional District on Long Island. Even though I do not live in her district, my family does, and of course, her district is where I am from. McCarthy’s rise to Congress was out of a tragic story, one that was a big part of our history here.
On December 7, 1993, as a Long Island Railroad train full of commuters from Manhattan, pulled into the Merillon Avenue station in Garden City, a crazed gunman by the name of Colin Ferguson opened fire in one of the cars. Two of his 25 victims were Dennis McCarthy and his son Kevin. Dennis was killed, along with five others; Kevin was one of 19 injured. As a result of her husband’s murder and son’s severe injuries, Carolyn, then a nurse, became an activist for gun control. Thereafter, she ran for Congress, and there she still sits.
She greeted us very enthusiastically, and listened to our presentation, including my story that I had pre-typed and saved in my Mercury speaking device. We took pictures, which she promised to send us. I told her what an inspiration she has been, and she told me how inspired she was by my presence in her office. As a followup, I contributed an entry on Metroblog NYC called “Carolyn McCarthy Rocks!” and somehow it came to the attention of Peter Kay, her Legislative Assistant, and he e-mailed to thank me. He said McCarthy was “tickled” to read my article!
Then, we were off to see Anthony Weiner, the Representative from my, and Louise’s district. Weiner is one of the sponsors of the ALS Registry Bill, which he quickly reminded us of while he whizzed by in the hall. We got to do our presentation to Weiner’s aide, and also to the aides of Hillary Clinton and Chuck Schumer, our two senators.
We were pretty exhausted by the time we arrived at Union Station for our 7:10 train.
Ellita and I had some dinner, and we boarded the train with Jody and Maria. We had an Access-a-Ride pickup scheduled for 10:21 at Penn Station – well in line with our scheduled arrival of 9:45. Well, as luck would have it, our train met with a mishap; sometime after Philadelphia, we smelled a fire. Some debris on the tracks caught fire and our train was badly delayed. We then knew we were going to lose Access-a-ride! So Jody used her power of “ big mouth” and requested that they send another van. Of course they wouldn’t confirm it to us. Long story short: I got to Penn Station, sent Ellita home in a taxi, while Jody and Maria Castronovo waited with me until Lynette arrived from my house in a taxi. I had no idea that taxis had gotten so expensive! Just ten years ago, I took taxis from Manhattan to Queens for under $20 and now they are more than $40!! Lynette arrived at Penn at 11:45, and we received a confirmed time for Access-a-Ride pickup of 1:00am. They arrived at 1:15, home at 1:45, to bed at 2:15am. I don’t think I need to say how exhausted I was the next day, but it was all worth it, and I can’t wait to do it again.
NEXT UP: Fern’s Fighters, Talking Machine battles, etc.
Friday, April 13, 2007
friends' deaths
Sherry Ketzbeau
When you have a terminal illness, and you correspond with, and/or become friends with another person with the same illness, you are bound to have to say goodbye. I never met Sherry in person, but she made me feel so not alone with this disease. She lived in Michigan on a farm and raised show bunnies, so I enjoyed looking at her website, even though I am not in favor of rabbit-breeding.
Sherry was a wife, a mother and a grandmother. I am none of those. I think I recall that Sherry lived 6 or 7 years with ALS.
There are 6,000 people a year dying of ALS. It seems as if every support group meeting I attend brings news of another death and every week on my yahoo group someone else dies. There are those who were diagnosed after me and are already gone. Although I am grateful I am still here, I mourn every time I hear of a PALS (person with ALS) gone.
Stem Cell Research -- Good News and Terrible News
This Tuesday, April 10, the U.S. Senate voted Wednesday on the Stem Cell Enhancement Bill (S.5). it passed 63 - 34, with strong bi-partisan support. Here's the link to see how your Senator voted: http://www.senate.gov/legislative/LIS/roll_call_lists/roll_call_vote_cfm.cfm?congress=110&session=1&vote=00127
OK that’s the good news. And now for the terrible news: this is below the magic number of 67 needed to override a promised Presidential veto. Does all this sound familiar and discouraging? Yes, the vote was similar last fall, the first time the Senate considered this bill. It was followed by Bush's first ever presidential veto. I guess this is like the fight for the handicapped-accessible door in my building -- i.e. unless disease touches you personally, you think it never will.
When you have a terminal illness, and you correspond with, and/or become friends with another person with the same illness, you are bound to have to say goodbye. I never met Sherry in person, but she made me feel so not alone with this disease. She lived in Michigan on a farm and raised show bunnies, so I enjoyed looking at her website, even though I am not in favor of rabbit-breeding.
Sherry was a wife, a mother and a grandmother. I am none of those. I think I recall that Sherry lived 6 or 7 years with ALS.
There are 6,000 people a year dying of ALS. It seems as if every support group meeting I attend brings news of another death and every week on my yahoo group someone else dies. There are those who were diagnosed after me and are already gone. Although I am grateful I am still here, I mourn every time I hear of a PALS (person with ALS) gone.
Stem Cell Research -- Good News and Terrible News
This Tuesday, April 10, the U.S. Senate voted Wednesday on the Stem Cell Enhancement Bill (S.5). it passed 63 - 34, with strong bi-partisan support. Here's the link to see how your Senator voted: http://www.senate.gov/legislative/LIS/roll_call_lists/roll_call_vote_cfm.cfm?congress=110&session=1&vote=00127
OK that’s the good news. And now for the terrible news: this is below the magic number of 67 needed to override a promised Presidential veto. Does all this sound familiar and discouraging? Yes, the vote was similar last fall, the first time the Senate considered this bill. It was followed by Bush's first ever presidential veto. I guess this is like the fight for the handicapped-accessible door in my building -- i.e. unless disease touches you personally, you think it never will.
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