Tuesday, April 13, 2010
On Wednesday, April 7, Prize4Life participated in the ALS Association’s ALS Awareness Day, working to raise awareness of ALS among legislators and to promote the funding of the ALS registry. Being a so-called ‘Orphan Disease’, ALS does not get the attention and funding that many feel it deserves, and this day was an opportunity to both push for awareness, and to focus priorities on a specific program goal. Above: Prize4Life staff Dr. A. Sheila Menzies, Dr. Melanie Leitner, Meghan Kallman, and Brooke Larimer at the Statehouse.
As noted in the ALS Association’s 2010 policy priorities, the Massachusetts ALS Registry is a state-wide ‘surveillance mechanism, enabling researchers to look at patterns of disease in the Commonwealth in their search for a cure (see a release on the project here). This registry is intended to help researchers study both the incidence and prevalence of the disease, identify trends, and develop additional research studies related to better understanding ALS. In the words of the ALS association: “The ALS Registry in Massachusetts brings us one step closer to a cure.”
The Registry was first authorized in Massachusetts by Section 26 of Chapter 140 of the Acts of 2003 (ie, the State budget). The budget line established a program for identifying all the ALS cases in Massachusetts through the Department of Public Health. The program was funded at $150,000 annually since it was initially authorized in 2003. However, the 2010 budget reflected a cut to less than half of that amount. The ALS Association believes that this project is too critical to let fall by the wayside, and rallied to lobby for funding in the original amount to maintain the ALS Registry.
The day opened with speeches by Debra Sharpe, president of the ALS Association. ALS advocate and patient Steven Saling, an architect working closely on the Leonard Florence Center for Living, gave a moving speech on his involvement in the center and his approach to life with ALS (the Center is a home designed especially to enable ALS patients to live independent, fulfilling lives—very cool. Check it out here). Suzanne Condon, Associate Commissioner of the Massachusetts Department of Public Health, updated the audience on the status of the state ALS Registry in Massachusetts. Dr. Tracie Caller, a researcher at Dartmouth Hitchcock, spoke about the current research taking place on the epidemiology of ALS in New England, specifically in New Hampshire.
Prize4Life believes that this is an important advocacy effort, and we were honored to participate. Following the introductory speeches, Prize4Life met with State Senator Patricia Jehlen, as well as Senator Anthony Petruccelli and his aid Donna LoConte. We also spoke with Representative Frank Smizik's staff, and left materials for Representative Lida Harkins. Additionally, Prize4Life’s Chief Scientific Officer, Melanie Leitner, was fortunate to speak with representatives from the Department of Public Health, including epidemiologist Dr. Christine Fischetti, who is working closely on the ALS registry (she signed up for our ALS Forum! Have you?) All meetings discussed the importance of supporting ALS research through this Registry effort, and the importance of focusing resources on finding a cure. Above: Brooke Larimer and Meghan Kallman with Senator Patricia Jehlen.
Organizations and individuals approached their meetings differently. One woman brought along a photograph of her mother, who had passed away from ALS, to show her elected officials, explaining through her tears why she cared so deeply about the project. Others spoke about the loved ones they had lost to the disease, while still others, ALS patients themselves and aided by canes or ventilators, arrived to advocate for themselves.
Be aware that the National ALS Advocacy Day and Public Policy Conference, is coming up, from May 9-11 in Washington, DC. May is also ALS Awareness Month—what will you do to help us find a cure?