Senator McCain:
Last year I almost died from a bone marrow failure disease. Because of research they found out that I had Aplastic Anemia. Because of research they were able to give me a bone marrow transplant. Because of research, the research you intend to take away, I am 1 year post transplant and am able to be with my children. Because of research my 2 and 3 year old children did not have to put their mother in the ground.
To all readers:
I am asking for your valuable and immediate support. Last year, Bone Marrow Failure Research & Treatment received funding; today, Sen John McCain supports a bill to eliminate that life-saving funding. Please go to http://AAMDS.org/ & support saving lives. It'll take 1 minute.
Send a letter to your Senator: AAMDS.org; Donate to AAMDS.
Showing posts with label Federal Bill. Show all posts
Showing posts with label Federal Bill. Show all posts
Saturday, March 12, 2011
U.S. Held In Highest Regard For Cure
If there will be a cure found for Aplastic Anemia, and we believe that there will one day be a cure, that cure will come from the United States. Senator McCain, you have the power to kill thousands.
Dear Senator McCain I am not a U.S resident but have the utmost respect for you country as you have always been great allies to England I am asking you to please not take away the funding into bone marrow disease research I dont have to rem...ind you of these terribble diseases as I know you are aware and I know resources are difficult but you are a leading country and others look upto you so your research in the U.S is paramount to continue if a cure is to be found I beg you not to take this funding away forget about statisitics its real people many many children are dying I have this disease myself and to be honest it grieves me more for the children it affects they are the ones with the disease and the ones which we as adults leave behind when we die from this disease as we will without the funding. I thankyou for taking the time to read my request respectfully yours Julie Anne Theobald.
Read more about an issue by clicking on a link below. For Advocacy issues (where we suggest you take action with your elected officials) you can follow the instructions on the screen to easily communicate with your elected officials.
Oppose McCain Amendment to Eliminate Funding for Research
The Aplastic Anemia & MDS International Foundation has received word that Senator John McCain (R-AZ) may be offering an amendment, as early as next week, to eliminate all fiscal year 2011 funding for (more)
Help Get Cosponsors for Bone Marrow Failure Legislation
On February 10, 2011, Representative Doris O. Matsui (D-CA) formally introduced the “Bone Marrow Failure Disease Research and Treatment Act” (H.R. 640)... (more)
Wisconsin:
Johnson, Ron - (R - WI) Class III
2 RUSSELL COURTYARD WASHINGTON DC 20510
(202) 224-5323
Web Form: ronjohnson.senate.gov/public/index.cfm/contact
Kohl, Herb - (D - WI) Class I
330 HART SENATE OFFICE BUILDING WASHINGTON DC 20510
(202) 224-5653
Web Form: kohl.senate.gov/contact.cfm
On February 10, 2011, Representative Doris O. Matsui (D-CA) formally introduced the “Bone Marrow Failure Disease Research and Treatment Act” (H.R. 640). This legislation would bring together the resources of several federal agencies to advance our understanding of, and treatments for aplastic anemia, myelodysplastic syndromes (MDS), and ParoPNH. We need your support now!
Suggested letter:
I am writing to ask you to cosponsor the "Bone Marrow Failure Disease Research and Treatment Act" (H.R. 640), introduced by Representative Doris Matsui (D-CA) on February 10, 2011. We need your support. As a constituent coping with bone marrow failure disease, I ask that you support this new comprehensive approach to combating these devastating diseases.
Every year approximately 20,000 to 30,000 Americans are diagnosed with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and other acquired bone marrow failure diseases.
The Bone Marrow Failure Disease Research and Treatment Act would leverage the expertise and resources of several agencies within the Department of Health and Human Services (HHS), as well as patient advocacy organizations, in a new comprehensive approach to combat bone marrow failure diseases. H.R. 640 increases the Federal Government's commitment to researching and treating aplastic anemia, MDS, PNH, and other acquired bone marrow failure diseases. The legislation directs the Department of Health and Human Services (HHS) to combat these diseases through a comprehensive strategy that includes creation of a national bone marrow failure disease registry so that researchers can combine their data in one place, yielding more effective research designs and better results and pilot studies through the Agency for Toxic Substances and Disease Registry to determine which environmental factors cause people to acquire bone marrow failure diseases.
Other highlights include minority-focused programs to make information on treatment options and clinical trials available to minority communities, particularly Hispanic and Asian American communities and Agency for Healthcare Research and Quality grants to help improve diagnostic practices and quality of care for patients with bone marrow failure diseases.
Last year, the U.S. House of Representatives approved a similar but modified version of the bill.
Congresswoman Matsui will be sending you a Dear Colleague letter in the coming weeks. Please consider becoming a cosponsor of this important legislation and contact Joel Bailey, Senior Legislative Assistant, in the office of Representative Matsui at joel.bailey@mail.house.gov or at (202) 225-7163.
Thank you for your attention to this important matter.
Oppose McCain Amendment to Eliminate Funding for Research
The Aplastic Anemia & MDS International Foundation has received word that Senator John McCain (R-AZ) may be offering an amendment, as early as next week, to eliminate all fiscal year 2011 funding for (more)
Help Get Cosponsors for Bone Marrow Failure Legislation
On February 10, 2011, Representative Doris O. Matsui (D-CA) formally introduced the “Bone Marrow Failure Disease Research and Treatment Act” (H.R. 640)... (more)
Wisconsin:
Johnson, Ron - (R - WI) Class III
2 RUSSELL COURTYARD WASHINGTON DC 20510
(202) 224-5323
Web Form: ronjohnson.senate.gov/public/index.cfm/contact
Kohl, Herb - (D - WI) Class I
330 HART SENATE OFFICE BUILDING WASHINGTON DC 20510
(202) 224-5653
Web Form: kohl.senate.gov/contact.cfm
On February 10, 2011, Representative Doris O. Matsui (D-CA) formally introduced the “Bone Marrow Failure Disease Research and Treatment Act” (H.R. 640). This legislation would bring together the resources of several federal agencies to advance our understanding of, and treatments for aplastic anemia, myelodysplastic syndromes (MDS), and ParoPNH. We need your support now!
Suggested letter:
I am writing to ask you to cosponsor the "Bone Marrow Failure Disease Research and Treatment Act" (H.R. 640), introduced by Representative Doris Matsui (D-CA) on February 10, 2011. We need your support. As a constituent coping with bone marrow failure disease, I ask that you support this new comprehensive approach to combating these devastating diseases.
Every year approximately 20,000 to 30,000 Americans are diagnosed with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and other acquired bone marrow failure diseases.
The Bone Marrow Failure Disease Research and Treatment Act would leverage the expertise and resources of several agencies within the Department of Health and Human Services (HHS), as well as patient advocacy organizations, in a new comprehensive approach to combat bone marrow failure diseases. H.R. 640 increases the Federal Government's commitment to researching and treating aplastic anemia, MDS, PNH, and other acquired bone marrow failure diseases. The legislation directs the Department of Health and Human Services (HHS) to combat these diseases through a comprehensive strategy that includes creation of a national bone marrow failure disease registry so that researchers can combine their data in one place, yielding more effective research designs and better results and pilot studies through the Agency for Toxic Substances and Disease Registry to determine which environmental factors cause people to acquire bone marrow failure diseases.
Other highlights include minority-focused programs to make information on treatment options and clinical trials available to minority communities, particularly Hispanic and Asian American communities and Agency for Healthcare Research and Quality grants to help improve diagnostic practices and quality of care for patients with bone marrow failure diseases.
Last year, the U.S. House of Representatives approved a similar but modified version of the bill.
Congresswoman Matsui will be sending you a Dear Colleague letter in the coming weeks. Please consider becoming a cosponsor of this important legislation and contact Joel Bailey, Senior Legislative Assistant, in the office of Representative Matsui at joel.bailey@mail.house.gov or at (202) 225-7163.
Thank you for your attention to this important matter.
URGENT - WRITE TO SEN JOHN MCCAIN BEFORE HE KILLS SOMEONE YOU LOVE
Here, we are reposting with permission a letter from a woman inflicted with Aplastic Anemia, PNH and Leukemia cells. If you haven't written to Senator John McCain, please take a moment to do so; the life that your letter may save may be yours or that of someone you love. If you cannot write a letter due to your medical or economic situation, please send us a message through this BLOG so that we can help you to do so.
Senator McCain,
My name is Exie Williams and I am a survivor of 2 forms of bone marrow failure. I am in remission, but I am not cured. The treatment options for people with bone marrow failure is minimal. By eliminating funding for the Congressionally-Directed Medical Research Programs at the Department of Defense for Bone Marrow Failure research, is without a doubt devestating to myself and many others. This is the world’s largest research program dedicated to finding a cure for bone marrow failure diseases like aplastic anemia, myelodysplastic syndromes, and PNH.
I ask that you take a moment and view a support group page and see the faces of the men, women, and children that this admendment will effect.
http://www.facebook.com/AplasticAnemia
I was diagnosed with Aplastic Anemia, PNH, and leukemia cells when I was 31 years old. I fought the fight of my life. There was a moment during my fight that it looked as if I was not responding to treatment and my father had to ask me what my wishes were for burial and for my young children. My 70 year old father had to face the fact that he may have to bury his daughter because we were running out of options. Through much prayer and faith, I pulled through and I won my fight and claimed remission. Everyday through the support group I created I see families who are losing their faith and their hope. Young children are dying or suffering, mothers and fathers are dying or suffering because there are no options left for them.
When I received this news today, I was heart broken for those who are not responding to treatment and who can not find suitable bone marrow donors.
I ask and pray that you will reconsider eliminating this last bit of hope that so many are holding on to. We need this research program to continue so that we can one day possibly have a cure.
I thank you for your time and consideration in this matter. This is so very important to so many who are suffering from bone marrow failure diseases.
Best Regards,
Exie Williams
----------------------------------------------------------------
Another letter to Senator John McCain:
Mr. McCain, I am the father of a 5 year old girl who has been diagnosed with MDS (myelodysplastic syndrome) This is a rare condition in which the body stops making blood or starts making malformed cells. This, as well as Aplastic Anemia, wh...ich she was originally diagnosed with, is a disease about which very little is known. 4 years ago, nothing was known, and they just supported the kids as best they could until they died. Leaps and bounds have been made though, and treatment options have become available, due in part to the DoD Bone Marrow Failure Disease Research program, which will be defunded as part of of an amendment you are adding to the Defense Appropriations Act for 2011. I understand that our deficit is out of control and spending must be cut, but when you cut medical research funding, you dont just cut the future of medical advancement, which is already under attack from the socialized medicine crowd. You also cut off the lives of people like my little girl, whose lives may depend on advances that have been and could be made on the strength of this research. There is so much waste in government as you pointed out in your campaign that could be cut or at least pursued before taking the knife to life saving research. I beg you for the sake of my daughter, Maelee Grace Sheehan, and on the behalf of so many others we have come to know as we fight this disease, please reconsider this portion of your cuts.
Senator McCain,
My name is Exie Williams and I am a survivor of 2 forms of bone marrow failure. I am in remission, but I am not cured. The treatment options for people with bone marrow failure is minimal. By eliminating funding for the Congressionally-Directed Medical Research Programs at the Department of Defense for Bone Marrow Failure research, is without a doubt devestating to myself and many others. This is the world’s largest research program dedicated to finding a cure for bone marrow failure diseases like aplastic anemia, myelodysplastic syndromes, and PNH.
I ask that you take a moment and view a support group page and see the faces of the men, women, and children that this admendment will effect.
http://www.facebook.com/AplasticAnemia
I was diagnosed with Aplastic Anemia, PNH, and leukemia cells when I was 31 years old. I fought the fight of my life. There was a moment during my fight that it looked as if I was not responding to treatment and my father had to ask me what my wishes were for burial and for my young children. My 70 year old father had to face the fact that he may have to bury his daughter because we were running out of options. Through much prayer and faith, I pulled through and I won my fight and claimed remission. Everyday through the support group I created I see families who are losing their faith and their hope. Young children are dying or suffering, mothers and fathers are dying or suffering because there are no options left for them.
When I received this news today, I was heart broken for those who are not responding to treatment and who can not find suitable bone marrow donors.
I ask and pray that you will reconsider eliminating this last bit of hope that so many are holding on to. We need this research program to continue so that we can one day possibly have a cure.
I thank you for your time and consideration in this matter. This is so very important to so many who are suffering from bone marrow failure diseases.
Best Regards,
Exie Williams
----------------------------------------------------------------
Another letter to Senator John McCain:
Mr. McCain, I am the father of a 5 year old girl who has been diagnosed with MDS (myelodysplastic syndrome) This is a rare condition in which the body stops making blood or starts making malformed cells. This, as well as Aplastic Anemia, wh...ich she was originally diagnosed with, is a disease about which very little is known. 4 years ago, nothing was known, and they just supported the kids as best they could until they died. Leaps and bounds have been made though, and treatment options have become available, due in part to the DoD Bone Marrow Failure Disease Research program, which will be defunded as part of of an amendment you are adding to the Defense Appropriations Act for 2011. I understand that our deficit is out of control and spending must be cut, but when you cut medical research funding, you dont just cut the future of medical advancement, which is already under attack from the socialized medicine crowd. You also cut off the lives of people like my little girl, whose lives may depend on advances that have been and could be made on the strength of this research. There is so much waste in government as you pointed out in your campaign that could be cut or at least pursued before taking the knife to life saving research. I beg you for the sake of my daughter, Maelee Grace Sheehan, and on the behalf of so many others we have come to know as we fight this disease, please reconsider this portion of your cuts.
Subscribe to:
Posts (Atom)