Patient-driven campaign seeks to put young face on ALS

CAMBRIDGE, MA: ALS Therapy Development Institute, a nonprofit biotech devoted to developing therapeutics for ALS (amyotrophic lateral sclerosis), is providing PR support for a new patient-driven campaign that puts a younger face on the neurodegenerative disease.

CAMBRIDGE, MA: ALS Therapy Development Institute, a nonprofit biotech devoted to developing therapeutics for ALS (amyotrophic lateral sclerosis), is providing PR support for a new patient-driven campaign that puts a younger face on the neurodegenerative disease.

The campaign, called “Young Faces of ALS”, is funded by an anonymous donor and is led by seven young men and women with ALS who plan to visit all 30 of the Major League Baseball (MLB) parks to educate people about how ALS can strike young adults and that there are no typical ALS patients.ALS is often referred to as Lou Gehrig's disease, after the former New York Yankees first baseman who died from the disease in 1941.

The group visited their first park on May 23—the Oakland-Alameda County Coliseum for a game between the Oakland Athletics and San Francisco Giants, where they answered  questions and encouraged people to make a $5 donation via text message toward ALS research.

“We were asked to be beneficiary of this campaign, and we said, ‘Sure, why not,'” said Robert Goldstein, director of corporate communications for ALS TDI.  “We're a research lab, and so we don't typically do advocacy or fund patient services, but this is something as an organization we had to get behind.”

ALS TDI is providing support in terms of media relations and social media, as well as outreach to the MLB teams. The campaign will include a Facebook page and website, complete with bios, pictures and a blog following the group's efforts and travels. Those elements are expected to launch after Memorial Day.

Goldstein said the campaign is important because there is a tendency in the nonprofit world to focus on an older demographic “because they are the ones that can write the big checks. But the average diagnosis of this disease is 35, and people are probably developing it a year or two before that. It is really a young person's disease.”

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