| October 28, 2008 |
Spinal Muscular Atrophy included in Social Security Administration’s new Compassionate Allowances
Read more here.
|
|
|
| September 30, 2008 |
Spinal Muscular Atrophy Treatment Acceleration Act Update
Click here.
|
|
|
| September 10, 2008 |
Guide Launched to Prepare Americans for Newly Passed Health Legislation
Coalition for Genetic Fairness Unveils Genetic Information Nondiscrimination Act Resource. Click here for details.
|
|
|
| September 2, 2008 |
A Link to Some General Information From the NIH
To help parents understand the how-when-where-why of clinical studies and clinical trials in their children.
|
|
|
| August 4, 2008 |
Congress Creates New Programs to Provide a High Quality Higher Education to Students with Disabilities
The Higher Education Opportunity Act establishes a National Technical Assistance Center to provide information on best practices to college students with disabilities and creates demonstration projects to support postsecondary faculty, staff, and administrators in educating students with disabilities. Please click on the link above to learn more.
|
|
|
| July 21, 2008 |
Senator Obama Cosponsors SMA Treatment Acceleration Act!
Families of SMA first contacted the Senator's office about the legislation in September 2007, and has continued to urge the Senator's support since that time. This news is particularly meaningful since Sen. Obama represents Illinois, the home of the FSMA national office for almost 25 years! Read more details here.......
|
|
|
| July 19, 2008 |
New FSMA Position Statement on Newborn Screening
FSMA believes that all newborns should be screened for Spinal Muscular Atrophy at birth…that early diagnosis of SMA and early medical intervention will extend life for babies with SMA, improve quality of life, and help families. Families of SMA is taking a leadership role in advocating for the addition of SMA to the Federal Uniform Newborn Screening Panel.
Here’s a tool to help everyone speak with one voice on this important issue.
|
|
|
| July 18, 2008 |
Sen. Clinton Cosponsors the SMA Treatment Acceleration Act
Senator Hillary Rodham Clinton (D-NY) officially became a cosponsor yesterday of the SMA Treatment Acceleration Act. Families of SMA is profoundly grateful for her support and the efforts of our local families in securing her backing. See here for some additional exciting announcements.
|
|
|
| July 16, 2008 |
FSMA Family Creates Online Petition Urging Congress to Support the SMA Treatment Acceleration Act
Victoria and Bill Strong, whose daughter Gwendolyn has SMA Type I, have established an online petition to urge Congress to pass the SMA Treatment Acceleration Act. Please click on this link to be taken to the petition. Families of SMA urges all of our members to contact Congress and let them know how important it is to pass this critical legislation.
|
|
|
| July 1, 2008 |
Senator Kerry Video Just Released!
View the speech from Senator John Kerry (D-MA) to the Families of SMA Annual Conference, during which he indicates his strong support for Families of SMA and the efforts of the SMA community to identify a treatment and cure. Senator Kerry also announces that he has signed on as a cosponsor to the SMA Treatment Acceleration Act. Families of SMA thanks Senator Kerry for his strong support.
|
|
|
| July 1, 2008 |
An Update on the Results of Your Grassroots Efforts!
Thanks to our grassroots efforts, 60 Members of the House of Representatives and 18 Senators have now signed on to the SMA Treatment Acceleration Act. Also included here: information on easy steps for you to take to join in the campaign.
|
|
|
| July 1, 2008 |
An Update on the Results of Your Grassroots Efforts!
Thanks to our grassroots efforts, 60 Members of the House of Representatives and 18 Senators have now signed on to the SMA Treatment Acceleration Act. Also included here: information on easy steps for you to take to join in the campaign.
|
|
|
| June 27, 2008 |
Sentate Appropriations Committee Releases Fiscal Year 2009 Appropriations Bill.
This contains report language under the NIH relative to SMA.
|
|
|
| June 27, 2008 |
House and Senate Report Language Relevant to SMA.
With some background information from FSMA.
|
|
|
| June 27, 2008 |
House Appropriations Committee Releases Fiscal Year 2009 Labor, Health & Human Services, and Education Appropriations Bill.
This contains report language under the NIH relative to SMA.
|
|
|
| June 23, 2008 |
SMA Community Formally Requests SMA Screening for All Newborns
Under the leadership of Families of SMA, the SMA community submitted a Nomination Form to the federal Advisory Committee responsible for determining the disorders for which all newborns in the United States are screened. The formal Nomination Form is attached
|
|
|
| June 23, 2008 |
SMA Treatment Acceleration Act Now Has 56 Cosponsors!
The SMA Treatment Acceleration Act has 56 cosponsors in the House of Representatives and 15 cosponsors in the Senate. Attached is a link to the Library of Congress website page that lists the cosponsors.
|
|
|
| June 23, 2008 |
Power Point Presentation on Contacting Congress
The Power Point Presentation from the 2008 Families of SMA Annual Conference in Boston on Contacting Congress is now available
|
|
|
| June 16, 2008 |
Washington Post Urges Congress to Pass Disability Legislation
Bill would create tax-exempt "savings account" for people with disabilities
|
|
|
| May 6, 2008 |
GINA Passes Congress
Health Insurers and Employers Prohibited from Discriminating Based Upon One's Genetic Profile
|
|
|
| April 24, 2008 |
SMA Treatment Acceleration Act News
The MDA Joins with the SMA Foundation, Families of SMA, and FightSMA to Endorse The Act.
|
|
|
| January 1, 2008 |
Nationwide Grassroots CALL TO ACTION
|
|
|
