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New bill makes supporting Lou Gehrig's disease research as easy as checking a box

Steve Carmody
Michigan Radio
A researcher at work in the University of Michigan's Center for Stem Cell Biology.

Michigan taxpayers may soon be able to support Alzheimer’s and ALS research with just a flick of a pen.

Last week, the Michigan House passed a bill that would create a checkoff form supporting unpaid caregivers of Alzheimer’s patients, as well research and care for patients with ALS — amyotrophic lateral sclerosis, better known as Lou Gehrig’s disease.

By checking a box on their income tax form, Michigan residents could choose to give to the ALS of Michigan Fund, with money heading to research, patient services, and ALS clinics around the state.

The bill is expected to pass today in the state Senate.

But the provision supporting ALS research might raise some eyebrows, especially in light of Michigan’s contentious history with stem cell research.

In 2008, voters approved Proposal 2, allowing the use of embryos in stem cell research.

Following the passage, state legislators made attempts to regulate the process, which some argued undermined the stem cell research done at institutions like the University of Michigan.

But this new proposal is unlikely to send much funding to stem cell researchers, said Sue Burstein-Kahn, executive director of ALS of Michigan.

The majority of the funds from the checkoff form, she said, will probably support community services, not stem cell work.

“Representative Farrington” — the Republican from Utica who sponsored the bill — “knows what we do, and understands how desperately more community services are needed,” said Kahn.

Kahn said that while research serves a “vital role” in the ALS community, the current reality of the disease means services like wheelchairs and speech therapies are desperately needed. (Many ALS patients — or pALS, as the ALS of Michigan call them — lose speaking ability as the disease progresses.)

"Right now we have no treatments and no cure," Burstein-Kahn said. "And while research is absolutely important, it gets a lot more funding than community services."

“Right now we have no treatments and no cure,” Burstein-Kahn said. “And while research is absolutely important, it gets a lot more funding than community services.”

ALS of Michigan is a local organization separate from the ALS Association of Michigan or ALSA.

ALSA supports research that includes stem cell work, while ALS of Michigan provides more patient services.

“We’re interested in getting pALS in contact with resources to make life with ALS easier,” Burstein-Kahn said. “The 24-hour care that many pALS need is phenomenally expensive. Hopefully this proposal will help make it easier for us to fund that.”

- Melanie Kruvelis, Michigan Radio Newsroom

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