By Senator Katherine Clark
Earlier this year we lost former Governor Paul Cellucci to Amyotrophic Lateral Sclerosis (ALS). Governor Cellucci showed great courage and strength in the face of this fatal disease, all the while working to raise awareness and millions of dollars for research.
In his honor, the Commonwealth’s ALS registry was named for him and included in the fiscal year 2014 budget. As a result of an amendment I proposed, funding for the registry will be doubled to $250,000.
It is fitting that this tribute to Governor Cellucci will fund vital research: because if we are to hasten a cure for ALS and other diseases we must invest in breakthroughs. The registry system supports innovation by providing more information to better understand ALS, allowing researchers to collect and analyze data and identify disease patterns, common risk factors and possible environmental influences.
ALS, also known as Lou Gehrig’s disease, is a neurodegenerative condition that attacks nerve cells in the spinal cord and brain. Over time, individuals with ALS lose the ability to control specific muscles, leading to paralysis, an inability to speak and eventually death due to respiratory failure. There is currently no cure.
The Centers for Disease Control and Prevention (CDC) estimate that at any one time 20,000–30,000 people in the U.S. have ALS. Every year, doctors tell about 5,000 people that they have the disease, with most diagnoses coming between the ages of 55 and 75 years, and many people living only 3 to 5 years after symptoms develop. According to the CDC, the causes of most cases of ALS are unclear, but scientists are studying many potential factors, including genetics, environmental exposures, diet and injury.
To investigate causes and prevalence, develop cutting-edge treatments and find a cure, we must continue to invest in our innovation economy right here in Massachusetts, bringing state, federal and private research dollars together to tackle this disease. One pioneering example is UMASS Medical School’s Day Laboratory for Neuromuscular Research, where world-leading research on ALS is conducted under the leadership of Dr. Robert H. Brown, Jr. The laboratory’s research is supported by the UMass ALS Champion Fund founded in 2011 by Governor Cellucci and his family.
You can contribute directly to funding ALS research by participating in the 12th Annual Walk of Hope for ALS on Saturday, September 7th in Wakefield. Last year’s walk raised nearly $100,000. Registration begins at 9:00 am at the Wakefield Common and the walk around beautiful Lake Quannapowitt starts at 11:00 am. You can learn more, donate or register at: theangelfund.org/walk-of-hope-signup/.