Monday, August 29, 2011
Lives Worth Living; PBS, Oct. 27
The documentary on the Disability Rights Movement of the last 40 years
entitled "Lives Worth Living" is now completed, and scheduled for
broadcasting on Public Television under Independent Lens on October 27th,
2011 at 10:00 pm.
Please share this news release with everyone you can think of who would be
interested in knowing about this history and the people involved who tell
the story. Additional information including a poster, post cards, and web
page will be available within the next few days.
This documentary is an opportunity to celebrate the work that was done by
those who are with us, and those who have passed on, especially our
recently deceased leader Fred Fay, who was the idea man behind this
documentary.
Best wishes to all in our disability advocacy.
Elmer
Elmer C. Bartels
12 Elm Brook Circle
Bedford, MA 01730
(t) 781-275-6078
(f) 781-275-5626
Ecbartels@verizon.net
Wednesday, August 24, 2011
Why Research Funding is Important to Me
Dancing in my spring ballet recital was a tradition growing up. But, in my junior year of high school, that tradition unexpectedly came to a halt. At 16 years old, I was suddenly unable to walk, which I later discovered was a direct result of my multiple sclerosis. After hearing my diagnosis, dancing was no longer my focus; the only thing I could concentrate on was getting back on my feet.
In time, my ability to walk was restored. Regaining strength and mobility was possible for me and for so many others because of years of research that occurred previous to my diagnosis in 2006. Now at 22 and still active, I wonder where I would be without the extensive research, the innovative drugs, and the dedicated scientists who work every day for more effective treatments and ultimately to cure MS.
I am not letting my diagnosis stop me—I will pursue a career and hopefully raise a family. Like so many others living with MS, though, I would love to not constantly worry about what tomorrow will bring. As thankful as I am for the treatments people living with MS now have and the progress we have made, I still want a cure. I still dream of a world free of MS. Research is the only road to a cure.
Please help me maintain my hope for a cure by asking Congress to continue to provide research funding for the National Institutes of Health (NIH), one of the premier national institutions that conducts MS research. As Congress moves forward preparing the Fiscal Year 2012 budget, click here to email your Members of Congress and let them know that NIH research is essential to maintaining hope for all of those living with MS by advancing the search for a cure. Together, we can make a difference.
In time, my ability to walk was restored. Regaining strength and mobility was possible for me and for so many others because of years of research that occurred previous to my diagnosis in 2006. Now at 22 and still active, I wonder where I would be without the extensive research, the innovative drugs, and the dedicated scientists who work every day for more effective treatments and ultimately to cure MS.
I am not letting my diagnosis stop me—I will pursue a career and hopefully raise a family. Like so many others living with MS, though, I would love to not constantly worry about what tomorrow will bring. As thankful as I am for the treatments people living with MS now have and the progress we have made, I still want a cure. I still dream of a world free of MS. Research is the only road to a cure.
Please help me maintain my hope for a cure by asking Congress to continue to provide research funding for the National Institutes of Health (NIH), one of the premier national institutions that conducts MS research. As Congress moves forward preparing the Fiscal Year 2012 budget, click here to email your Members of Congress and let them know that NIH research is essential to maintaining hope for all of those living with MS by advancing the search for a cure. Together, we can make a difference.
Participate in an online survey about Social Support, Outcome expectations and physical activity!
Dear Friend,
You are being invited to participate in a research study to assess how social support and outcome expectations relate to physical activity in people with multiple sclerosis. If you have already received this email and have completed the survey, thank you! We appreciate your effort and support.
If you have not yet completed the survey, we would appreciate your participation. You are being asked to participate in this survey because you are an adult with MS. The information gained through this research will provide helpful insight into adoption and adherence to exercise by those with MS and into possible strategies to promote physical activity.
First, you will be asked to complete a short survey to determine eligibility. Once deemed eligible, then you will be asked to complete an online survey, the completion of which should take you about 20 to 30 minutes. The types of questions will include information such as your demographics, current physical activity levels, confidence in your balance and walking, what you expect from exercise, and how you feel supported or not supported to exercise by family and friends. The information obtained during this study will be treated as confidential with your right to privacy assured. The results of the investigation may be published but your name will not be revealed in any part of the study. All data will be analyzed and referred to with a code number that will be known only to the investigators and stored securely throughout the course of the study. The survey and your responses will be deleted after completion of the study.
Your participation in this study is voluntary and there are no personal risks associated with your participation in this study. You may withdraw or discontinue participation at any time without penalty or prejudice. Your consent to participate is implied once you complete the survey. We ask that if you are interested in participation that the survey be completed within the subsequent two weeks upon your reception of this letter, although it is expected that the survey will remain open and available to complete until 5:00pm Tuesday, September 5, 2011.
Any questions concerning the research or your participation should be directed to Kelley E. Groll, Undergraduate, Department of Rehabilitation and Movement Science, University of Vermont, Burlington, VT 05405 at MSstudyUVM@gmail.com
If you have any questions about your rights as a participant in a research project, you should contact Nancy Stalnaker, the director of the Research Protections Office at the university of Vermont at (802) 656- 5040
Your decision to participate is sincerely appreciated.
Please connect to this link to take the survey. Thank you!
You are being invited to participate in a research study to assess how social support and outcome expectations relate to physical activity in people with multiple sclerosis. If you have already received this email and have completed the survey, thank you! We appreciate your effort and support.
If you have not yet completed the survey, we would appreciate your participation. You are being asked to participate in this survey because you are an adult with MS. The information gained through this research will provide helpful insight into adoption and adherence to exercise by those with MS and into possible strategies to promote physical activity.
First, you will be asked to complete a short survey to determine eligibility. Once deemed eligible, then you will be asked to complete an online survey, the completion of which should take you about 20 to 30 minutes. The types of questions will include information such as your demographics, current physical activity levels, confidence in your balance and walking, what you expect from exercise, and how you feel supported or not supported to exercise by family and friends. The information obtained during this study will be treated as confidential with your right to privacy assured. The results of the investigation may be published but your name will not be revealed in any part of the study. All data will be analyzed and referred to with a code number that will be known only to the investigators and stored securely throughout the course of the study. The survey and your responses will be deleted after completion of the study.
Your participation in this study is voluntary and there are no personal risks associated with your participation in this study. You may withdraw or discontinue participation at any time without penalty or prejudice. Your consent to participate is implied once you complete the survey. We ask that if you are interested in participation that the survey be completed within the subsequent two weeks upon your reception of this letter, although it is expected that the survey will remain open and available to complete until 5:00pm Tuesday, September 5, 2011.
Any questions concerning the research or your participation should be directed to Kelley E. Groll, Undergraduate, Department of Rehabilitation and Movement Science, University of Vermont, Burlington, VT 05405 at MSstudyUVM@gmail.com
If you have any questions about your rights as a participant in a research project, you should contact Nancy Stalnaker, the director of the Research Protections Office at the university of Vermont at (802) 656- 5040
Your decision to participate is sincerely appreciated.
Please connect to this link to take the survey. Thank you!
Monday, August 15, 2011
Federal Focus - August 2011
Bill Reintroduced to Ensure Collection of Basic MS Data
On July 20, 2011, Representatives Chris Van Hollen (MD-8) and Michael Burgess, M.D. (TX-26) co-introduced the National Neurological Diseases Surveillance System Act (H.R. 2595). This bill was introduced with 22 bi-partisan cosponsors and acts as the companion legislation to S.425, the Senate version of the bill introduced in March 2011 by Senator Mark Udall (CO).
This legislation was introduced to try to address a basic but important question for the MS community—how many people in the United States currently live with MS? Currently, there is no accurate national data on how many Americans are living with MS. This bill will try to address this gap in knowledge by creating a surveillance system, or a database, that will collect information on the number of people who are newly-diagnosed with MS every year and how many total people are currently living with MS in the United States. The bill will create, for the first time, separate, permanent, and coordinated national databases at the Centers for Disease Control and Prevention (CDC) for diseases including MS and other neurological conditions. The information will lay a foundation that will allow researchers to better evaluate and understand disease factors, including geographic clusters of diagnoses, variances in gender ratio, changes in health care practices, and fluctuations in disease burden and population over time. Ultimately, this information will provide researchers with important information about the disease and will move studies for a cure forward.
Similar legislation was introduced last session of Congress, the National MS and Parkinson’s Disease Registries Act (H.R. 1362/S. 1273). With the help of many relentless MS activists, last session’s legislation passed the House; however, because it did not pass in the Senate, the bill must once again be considered and approved by the House.
Click here to ask your Representative to support collection of better, more comprehensive MS data and cosponsor H.R. 2595, the National Neurological Diseases Surveillance System Act.
Debt Deal Means Possible Changes Down the Road
On August 2, the President signed into law the Budget Control Act of 2011. In addition to permitting the President to raise the debt ceiling limit and avoid default, the law addresses federal spending and the deficit both through immediate changes and a process that could lead to changes down the road. To address the national deficit, federal discretionary spending has been capped through 2021; it is anticipated that this will generate nearly $1 trillion in deficit reduction.
Possible changes down the road could have a serious impact on federal programs that are important to persons living with disabilities. Just last week, a bipartisan Congressional Joint Select Committee was selected that is tasked with developing recommendations for an additional $1.2-1.5 trillion in long-term deficit reduction. Everything is theoretically on the table when developing these recommendations—including Medicare, Medicaid, and Social Security. The following members of Congress were appointed to the Committee: Senators Patty Murray (WA), John Kerry (MA), Max Baucus (MT), Jon Kyl (AZ), Pat Toomey (PA), and Rob Portman (OH) and Representatives Jeb Hensarling (TX-5), Dave Camp (MI-4), Fred Upton (MI-6), Chris Van Hollen (MD-8), James Clyburn (SC-6), and Xavier Beccera (CA-31).
Approximately one-quarter of people living with MS rely on Medicare for access to the following essential care: access to doctors, diagnostic equipment, durable medical devices, MRIs, prescription drugs, and home health care. Medicaid is another important component of the health care system--providing health coverage to 8 million individuals living with disabilities and to approximately 9 million low-income Medicare beneficiaries who depend on Medicaid to fill coverage gaps. While it is estimated that only 5-10% of persons living with MS rely on Medicaid, the services that Medicaid provide are particularly valuable. Medicaid is the primary public source of funding for long-term services and supports and also has a strong track record of providing home-and-community-based services that allow individuals with MS to live and work in their communities and avoid costlier and premature admission to institutional facilities.
This Joint Committee must approve its recommendations and put forth legislation by November 23, 2011. Congress must then vote on the legislation by December 23, 2011. If the Joint Committee fails to approve recommendations or Congress fails to pass the legislation, automatic cuts will happen across the board that in total, save $1.2 trillion. If the Joint Committee approves and Congress passes a proposal that saves less than $1.2 trillion, automatic cuts will make up the difference. The good news for disability advocates is that Congress exempted Medicaid and Social Security should these automatic cuts have to occur. Medicare providers could face up to 2% cuts, but Medicare beneficiaries' cost sharing cannot be increased and benefits may not be reduced. Significant structural changes to entitlement programs like Medicaid could happen through the Committee’s recommendations though and the Society will continue to monitor any potential impact that persons living with disabilities could face. Stay tuned for updates from the Public Policy Office and for opportunities to weigh in with your federal legislators!
ADA Celebrates its 21st Anniversary
July 26 was the 21st anniversary of enactment of the Americans with Disabilities Act (ADA). A landmark civil rights law, the ADA prohibits discrimination on the basis of disability in employment, State and local government services, public transportation, public accommodations, commercial facilities, and telecommunications. The Society’s Public Policy Office attended a celebration on Capitol Hill attended by U.S. Department of Health and Human Services Department Secretary Kathleen Sebelius and several federal legislators who were integral to the law’s passage over twenty years ago including Senators Mark Pryor (AR), and Tom Harkin (IA) and House Minority Whip Steny Hoyer (MD-5). Speakers discussed the law’s importance, the strides we have made in terms of accessibility, and the path we must continue in order to realize the ADA’s full promise of equal rights. To see pictures from the celebration and read more, visit the MS Activist Blog.
On July 20, 2011, Representatives Chris Van Hollen (MD-8) and Michael Burgess, M.D. (TX-26) co-introduced the National Neurological Diseases Surveillance System Act (H.R. 2595). This bill was introduced with 22 bi-partisan cosponsors and acts as the companion legislation to S.425, the Senate version of the bill introduced in March 2011 by Senator Mark Udall (CO).
This legislation was introduced to try to address a basic but important question for the MS community—how many people in the United States currently live with MS? Currently, there is no accurate national data on how many Americans are living with MS. This bill will try to address this gap in knowledge by creating a surveillance system, or a database, that will collect information on the number of people who are newly-diagnosed with MS every year and how many total people are currently living with MS in the United States. The bill will create, for the first time, separate, permanent, and coordinated national databases at the Centers for Disease Control and Prevention (CDC) for diseases including MS and other neurological conditions. The information will lay a foundation that will allow researchers to better evaluate and understand disease factors, including geographic clusters of diagnoses, variances in gender ratio, changes in health care practices, and fluctuations in disease burden and population over time. Ultimately, this information will provide researchers with important information about the disease and will move studies for a cure forward.
Similar legislation was introduced last session of Congress, the National MS and Parkinson’s Disease Registries Act (H.R. 1362/S. 1273). With the help of many relentless MS activists, last session’s legislation passed the House; however, because it did not pass in the Senate, the bill must once again be considered and approved by the House.
Click here to ask your Representative to support collection of better, more comprehensive MS data and cosponsor H.R. 2595, the National Neurological Diseases Surveillance System Act.
Debt Deal Means Possible Changes Down the Road
On August 2, the President signed into law the Budget Control Act of 2011. In addition to permitting the President to raise the debt ceiling limit and avoid default, the law addresses federal spending and the deficit both through immediate changes and a process that could lead to changes down the road. To address the national deficit, federal discretionary spending has been capped through 2021; it is anticipated that this will generate nearly $1 trillion in deficit reduction.
Possible changes down the road could have a serious impact on federal programs that are important to persons living with disabilities. Just last week, a bipartisan Congressional Joint Select Committee was selected that is tasked with developing recommendations for an additional $1.2-1.5 trillion in long-term deficit reduction. Everything is theoretically on the table when developing these recommendations—including Medicare, Medicaid, and Social Security. The following members of Congress were appointed to the Committee: Senators Patty Murray (WA), John Kerry (MA), Max Baucus (MT), Jon Kyl (AZ), Pat Toomey (PA), and Rob Portman (OH) and Representatives Jeb Hensarling (TX-5), Dave Camp (MI-4), Fred Upton (MI-6), Chris Van Hollen (MD-8), James Clyburn (SC-6), and Xavier Beccera (CA-31).
Approximately one-quarter of people living with MS rely on Medicare for access to the following essential care: access to doctors, diagnostic equipment, durable medical devices, MRIs, prescription drugs, and home health care. Medicaid is another important component of the health care system--providing health coverage to 8 million individuals living with disabilities and to approximately 9 million low-income Medicare beneficiaries who depend on Medicaid to fill coverage gaps. While it is estimated that only 5-10% of persons living with MS rely on Medicaid, the services that Medicaid provide are particularly valuable. Medicaid is the primary public source of funding for long-term services and supports and also has a strong track record of providing home-and-community-based services that allow individuals with MS to live and work in their communities and avoid costlier and premature admission to institutional facilities.
This Joint Committee must approve its recommendations and put forth legislation by November 23, 2011. Congress must then vote on the legislation by December 23, 2011. If the Joint Committee fails to approve recommendations or Congress fails to pass the legislation, automatic cuts will happen across the board that in total, save $1.2 trillion. If the Joint Committee approves and Congress passes a proposal that saves less than $1.2 trillion, automatic cuts will make up the difference. The good news for disability advocates is that Congress exempted Medicaid and Social Security should these automatic cuts have to occur. Medicare providers could face up to 2% cuts, but Medicare beneficiaries' cost sharing cannot be increased and benefits may not be reduced. Significant structural changes to entitlement programs like Medicaid could happen through the Committee’s recommendations though and the Society will continue to monitor any potential impact that persons living with disabilities could face. Stay tuned for updates from the Public Policy Office and for opportunities to weigh in with your federal legislators!
ADA Celebrates its 21st Anniversary
July 26 was the 21st anniversary of enactment of the Americans with Disabilities Act (ADA). A landmark civil rights law, the ADA prohibits discrimination on the basis of disability in employment, State and local government services, public transportation, public accommodations, commercial facilities, and telecommunications. The Society’s Public Policy Office attended a celebration on Capitol Hill attended by U.S. Department of Health and Human Services Department Secretary Kathleen Sebelius and several federal legislators who were integral to the law’s passage over twenty years ago including Senators Mark Pryor (AR), and Tom Harkin (IA) and House Minority Whip Steny Hoyer (MD-5). Speakers discussed the law’s importance, the strides we have made in terms of accessibility, and the path we must continue in order to realize the ADA’s full promise of equal rights. To see pictures from the celebration and read more, visit the MS Activist Blog.
Tuesday, August 9, 2011
Participate in an online survey about Social Support, Outcome expectations and physical activity!
Dear Friend,
You are being invited to participate in a research study to assess how social support and outcome expectations relate to physical activity in people with multiple sclerosis. You are being asked to participate in this survey because you are an adult with MS. The information gained through this research will provide helpful insight into adoption and adherence to exercise by those with MS and into possible strategies to promote physical activity.
First, you will be asked to complete a short survey to determine eligibility. Once deemed eligible, then you will be asked to complete an online survey, the completion of which should take you about 20 to 30 minutes. The types of questions will include information such as your demographics, current physical activity levels, confidence in your balance and walking, what you expect from exercise, and how you feel supported or not supported to exercise by family and friends. The information obtained during this study will be treated as confidential with your right to privacy assured. The results of the investigation may be published but your name will not be revealed in any part of the study. All data will be analyzed and referred to with a code number that will be known only to the investigators and stored securely throughout the course of the study. The survey and your responses will be deleted after completion of the study.
Your participation in this study is voluntary and there are no personal risks associated with your participation in this study. You may withdraw or discontinue participation at any time without penalty or prejudice. Your consent to participate is implied once you complete the survey. We ask that if you are interested in participation that the survey be completed within the subsequent two weeks upon your reception of this letter, although it is expected that the survey will remain open and available to complete until 5:00pm Tuesday, September 5, 2011.
Any questions concerning the research or your participation should be directed to Kelley E. Groll, Undergraduate, Department of Rehabilitation and Movement Science, University of Vermont, Burlington, VT 05405 at MSstudyUVM@gmail.com
If you have any questions about your rights as a participant in a research project, you should contact Nancy Stalnaker, the director of the Research Protections Office at the university of Vermont at (802) 656- 5040
Your decision to participate is sincerely appreciated.
Please connect to this link to take the survey. Thank you!
click here
You are being invited to participate in a research study to assess how social support and outcome expectations relate to physical activity in people with multiple sclerosis. You are being asked to participate in this survey because you are an adult with MS. The information gained through this research will provide helpful insight into adoption and adherence to exercise by those with MS and into possible strategies to promote physical activity.
First, you will be asked to complete a short survey to determine eligibility. Once deemed eligible, then you will be asked to complete an online survey, the completion of which should take you about 20 to 30 minutes. The types of questions will include information such as your demographics, current physical activity levels, confidence in your balance and walking, what you expect from exercise, and how you feel supported or not supported to exercise by family and friends. The information obtained during this study will be treated as confidential with your right to privacy assured. The results of the investigation may be published but your name will not be revealed in any part of the study. All data will be analyzed and referred to with a code number that will be known only to the investigators and stored securely throughout the course of the study. The survey and your responses will be deleted after completion of the study.
Your participation in this study is voluntary and there are no personal risks associated with your participation in this study. You may withdraw or discontinue participation at any time without penalty or prejudice. Your consent to participate is implied once you complete the survey. We ask that if you are interested in participation that the survey be completed within the subsequent two weeks upon your reception of this letter, although it is expected that the survey will remain open and available to complete until 5:00pm Tuesday, September 5, 2011.
Any questions concerning the research or your participation should be directed to Kelley E. Groll, Undergraduate, Department of Rehabilitation and Movement Science, University of Vermont, Burlington, VT 05405 at MSstudyUVM@gmail.com
If you have any questions about your rights as a participant in a research project, you should contact Nancy Stalnaker, the director of the Research Protections Office at the university of Vermont at (802) 656- 5040
Your decision to participate is sincerely appreciated.
Please connect to this link to take the survey. Thank you!
click here
Subscribe to:
Posts (Atom)
About Me
- Steve
- North Grafton, Massachusetts, United States
- Well-educated, disabled at this point with Multiple Sclerosis. I am very glad that I was able to do the things that I have been able to do over the years. had to change the picture, this one's more realistic.