- MDA’s National Advocacy Office in Washington, D.C., works toward four goals on behalf of people affected by ALS: accelerating research; expanding federal and state resources; protecting the civil rights of people affected by ALS; and facilitating public-private partnerships.
- People wanting to get involved in ALS advocacy are encouraged to do so in a number of ways, from becoming an MDA advocate to contacting their representatives about pending legislation.
“Advocacy is about access and empowerment,” said Annie Kennedy, MDA Vice President — Advocacy. “It’s about raising awareness of ALS and what the ALS community needs.”
MDA’s national advocacy office in Washington, D.C., works toward four goals on behalf of people affected by ALS, Kennedy explained during the MDA public webinar “ALS Advocacy Town Hall” on May 25.
These goals are: accelerating research; expanding federal and state resources; protecting the civil rights of people affected by ALS; and facilitating public-private partnerships.
ALS and MDA’s mission
Kennedy’s presentation began with a brief history of MDA’s commitment to ALS services and research. Since the early 1950s, when Lou Gehrig’s widow Eleanor started working with MDA, the Association has spent more than $270 million on ALS research, services and support. Currently, the Association has committed about $22 million to ALS research, more than any other nongovernmental organization in the world. Of the 300 research projects MDA currently funds, 60 of them are for ALS.
“MDA funds the best cure-driven science available,” Kennedy said. It also funds 37 MDA/ALS clinics, more than 200 MDA clinics serving the ALS community, the ALS Clinical Research Network, support groups for individuals and caregivers, home visits, therapy consults, durable medical equipment loans and repairs, flu shots, online communities and more.
More money for research and services
In an effort to increase funding for ALS research and services, MDA participates in a coalition of organizations working to raise the budget of the National Institutes of Health, as well as supporting efforts to get research funding for ALS from other federal agencies, such as the Department of Defense. (ALS has been linked to service in the Gulf War, and perhaps to military service in general.)
Beyond research funding, MDA supports legislative initiatives to repeal competitive bidding for durable medical equipment, to give people more choice and control over their Medicare spending, and to give more support to caregivers. The advocacy office also is working with federal agencies to clearly define airline restrictions for carry-on breathing equipment.
How to get involved
“A broad spectrum of issues affect ALS families and caregivers,” Kennedy said. “We urge everyone to get involved.”
Individuals can register as MDA advocates and sign up to receive action alerts and The Voice, MDA’s monthly advocacy e-newsletter. Other ways to get involved include joining MDA’s local advisory committees or being nominated to serve on MDA’s National Task Force on Public Awareness. And everyone can participate in the MDA Fly Out, a grassroots advocacy effort that takes place around the country every August during the Congressional recess. (Rather than advocates “flying in” to Washington to meet with members of Congress, the legislators “fly out” to meet with constituents in their home districts.)
“There’s a whole world of ALS advocacy and ALS events — and we need you,” Kennedy said. She urged viewers to go to MDA’s ALS Division website (als.mda.org/advocacy) to learn more about relevant legislation and how to contact their elected officials.
To view the entire webinar (and other public webinars sponsored by MDA) go to www.mda.org/services/webinar.html.