Due to MS activists' countless emails, phone calls, and discussions, the House of Representatives passed the National Neurological Diseases Surveillance System Act (H.R. 1362) late last night. This bill is one significant step closer to becoming law. For the past two years, we have been working hard along with our partners in the Parkinson’s community to make this a reality. Thank you!
This legislation will establish a national data surveillance system that will track and collect data on the epidemiology, incidence, prevalence, and other factors of neurological diseases, including multiple sclerosis (MS) and Parkinson’s. Currently, such a national coordinated system does not exist to collect data on MS. The development of a surveillance system will address this gap by gathering all existing data on the incidence and prevalence of MS in one location. As a result, this system could help uncover and inform promising areas of MS research such as: genetic and environmental risk factors, and support the discovery of disease therapies, treatments, and one day—a cure.
Last night’s passage in the House was historic, but we are not quite done yet. To make this data system a reality, the Senate must take action on S. 1273. Stay tuned, as we will need you to continue your advocacy and urge your Senators to support passage of S. 1273 this Congress.
Wednesday, September 29, 2010
Monday, September 27, 2010
Take Action to Advance the MS Registry Bill
Congress has heard your requests and the House of Representatives will be considering H.R. 1362, the National Neurological Diseases Surveillance System Act, tomorrow on the House floor! Just last week, the House Energy & Commerce Committee met to mark-up H.R. 1362. During this meeting, the National MS and Parkinson’s Disease Registries Act was expanded to make the surveillance system available to all neurological conditions, maintaining MS and Parkinson’s as a priority. The Committee unanimously passed H.R. 1362.
This legislation will establish a national data surveillance system that will track and collect data on the epidemiology, incidence, prevalence, and other factors of neurological diseases, including multiple sclerosis and Parkinson’s. Currently, such a national coordinated system does not exist to collect data on MS. This system could help uncover and inform promising areas of MS research such as: genetic and environmental risk factors, and support the discovery of disease therapies, treatments, and one day—a cure.
Victory in the House will bring us further than we have ever been before, so please continue to voice your support! Click here to email your U.S. Representative today!
This legislation will establish a national data surveillance system that will track and collect data on the epidemiology, incidence, prevalence, and other factors of neurological diseases, including multiple sclerosis and Parkinson’s. Currently, such a national coordinated system does not exist to collect data on MS. This system could help uncover and inform promising areas of MS research such as: genetic and environmental risk factors, and support the discovery of disease therapies, treatments, and one day—a cure.
Victory in the House will bring us further than we have ever been before, so please continue to voice your support! Click here to email your U.S. Representative today!
Adult Day Achievement Center Enhancement Act Introduced
On September 23, Congresswoman Barbara Lee (CA-9) introduced the Adult Day Achievement Center Enhancement Act (H.R. 6208). The legislation would create a new grant program within the Administration on Aging that is specifically designed to support Adult Day programs targeting a younger population of people, such as those living with multiple sclerosis and similar diseases.
MS Adult Day Programs (MSADP) provide an important response to the needs of people with severe MS and their caregivers. For persons living with MS, MSADPs offer medical care, rehabilitation therapies, assistance with activities of daily living, nutrition therapy, health monitoring, social interaction, and stimulating activities that are appropriate for a younger disabled population. These can help to ameliorate MS symptoms, reduce dependency, provide important socialization opportunities and maintain quality of life. Additionally, MSADPs provide caregivers of people living with MS an opportunity to seek employment, run errands or simply offer some respite during the day.
There are less than a dozen MSADPs in the United States at present; thus, the vast majority of the MS population is denied access to these enormously beneficial programs. The National MS Society thanks Congresswoman Lee for her leadership on this issue, as H.R. 6208 will increase access and help people living with MS and their families to live even more productive and fulfilling lives.
MS Adult Day Programs (MSADP) provide an important response to the needs of people with severe MS and their caregivers. For persons living with MS, MSADPs offer medical care, rehabilitation therapies, assistance with activities of daily living, nutrition therapy, health monitoring, social interaction, and stimulating activities that are appropriate for a younger disabled population. These can help to ameliorate MS symptoms, reduce dependency, provide important socialization opportunities and maintain quality of life. Additionally, MSADPs provide caregivers of people living with MS an opportunity to seek employment, run errands or simply offer some respite during the day.
There are less than a dozen MSADPs in the United States at present; thus, the vast majority of the MS population is denied access to these enormously beneficial programs. The National MS Society thanks Congresswoman Lee for her leadership on this issue, as H.R. 6208 will increase access and help people living with MS and their families to live even more productive and fulfilling lives.
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