Ensure Stem Cell Legislation Gets Priority Attention

Two weeks ago, a federal judge issued a preliminary injunction halting all federal funding for human embryonic stem cell research (ESCR). This was a huge setback on the achievements that MS Activists have fought hard to attain in our efforts to move us closer to a world free of multiple sclerosis. Fortunately, just today, the DC Court of Appeals sided with the Department of Justice and stopped the preliminary injunction from halting federal funding for human embryonic stem cell research. This ruling is temporary and only in place while the full arguments are heard in the Court of Appeals. These full arguments could occur later this month. The Director of the National Institutes of Health (NIH), Dr. Francis Collins, indicated emphatically that he views the attempts to block federal funding as a major crisis in science and that delays will cause irreparable damage to critical research being conducted utilizing stem cells.

With the help of MS Activists, Congress twice comfortably passed bi-partisan legislation permitting federal funding of ESCR, but both bills received presidential vetoes. However, in 2009 an Executive Order lifted previous restrictions on federal funding of ESCR and brought new hope to the millions of people living with chronic and debilitating diseases or disabilities. Click here to see the Society’s historical work with ESCR.

The current judicial proceedings threaten the progress we have made in stem cell research. Once again, MS Activists must mobilize to ensure that scientists and researchers have the funding and authority they need to explore this promising field of ESCR.

While legal battles in the court system are underway, the only way to guarantee a permanent solution is to pass bi-partisan legislation. Congress must make it a priority to secure a legislative fix to this situation immediately. There are already bi-partisan efforts underway, but we need broad support to fuel momentum.

Congress will soon be back from its summer recess but will only have a few weeks before it recesses again for the November election. That time between Congressional recesses may be the last opportunity to secure needed action from the 111th Congress.

The National MS Society has made a commitment to pursue promising avenues that will lead to solutions that stop disease progression, restore function, and ultimately prevent future generations from ever receiving an MS diagnosis. This commitment is reflected in our decision to support the conduct of scientifically meritorious medical research, including research using human cells, in accordance with federal, state and local laws, and with adherence to the strictest ethical and procedural guidelines. This decision was not reached without intense scrutiny and discussion among volunteers, people living with MS, ethicists, researchers and scientists, and MS neurologists.

Ultimately, more research is needed to better understand which stem cells, and from what sources, could hold significant promise for repairing damage and restoring function, as well as provide a better understanding of the underlying disease cause.

Click here to email your Members of Congress today and ask them to make stem cell research legislation a priority this session.

Lifespan Respite Grants to 12 States Announced

On September 7, the U.S. Administration on Aging announced grant awards totaling approximately $2.25 million to twelve states to implement the Lifespan Respite Care Program. Grant awards were made to the following states: Delaware, Kansas, Louisiana, Massachusetts, Minnesota, Nebraska, New York, Oklahoma, Pennsylvania, Washington, Wisconsin, and Utah.

Up to one quarter of individuals living with MS require long-term care services at some point during the course of the disease. Often, a family member steps into the role of primary caregiver to be closer to the individual with MS and involved in care decisions. Respite provides temporary relief to caregivers from the ongoing responsibility of caring for individuals of all ages with special needs—including those living with MS. The Lifespan Respite Care Program was enacted in 2006 and is intended to enable states to better coordinate existing respite services, identify service gaps, and create and monitor new respite services while providing opportunities to recruit, train and support paid and volunteer respite providers and raise public awareness about the need for and importance of respite services.

The grants announced on September 7 represent the Fiscal Year 2010 funding. The Society continues to advocate for increased funding for Lifespan Respite in Fiscal Year 2011. The Senate Appropriations Committee recently approved an increase, for a total appropriation of $7 million for Lifespan Respite. Stay tuned for opportunities to weigh in with your federal lawmakers regarding the Lifespan Respite Care Program.