WARWICK, R.I. (WPRI) — The ALS Association is trying to continue its efforts, with many of its planned fundraising events canceled due to COVID-19.
May is ALS Awareness Month, and the ALS Rhode Island Chapter is marking 30 years of service.
ALS Rhode Island Chapter Executive Director Beth Flanagan said she’s focusing on a few key messages.
“The more awareness we get, the better chance we have at getting the support we need to help them,” Flanagan said. “In my mind, you’re never too young to become an advocate.”
With ALS Youth Action Day being this Saturday, Flanagan thinks it’s important to spread a message on youth advocacy and action.
“We’re hoping to get some engagement from youth and teenagers that can spread some hope by spreading some awareness about the disease,” Flanagan said.
There will be a virtual event on Saturday, which will be open to kids of all ages. The event, which aims to educate and inspire, is crucial, according to ALS patient Robin Ramos.
“It’s hard for an adult to understand, never mind explaining it to a young person,” Ramos said. “It’s very important they become educated with the facts.”
Flanagan also announced the new 30 for 30 initiative: a fundraiser in lieu of canceled events due to COVID-19.
“We’re hoping to push this initiative asking people for 30 dollars to honor the 30 years of service so that we can hopefully continue and gear towards sustainability funding for the programs,” Flanagan said.
The organization provides vital services to those with the disease. Ramos was diagnosed in 2017, five days before Christmas, and in the two-and-a-half years since, the Rhode Island Chapter has become her second home.
“Just because it doesn’t affect as many people as other diseases, awareness really needs to come, we need a cure and we needed a cure yesterday,” Ramos said.
Money raised with the 30 for 30 initiative will go directly toward helping ALS patients. The chapter is hoping to see kids this Saturday making posters, writing songs, using their skills to raise awareness and posting on social media.
“We’ve had success providing services during this time,” Flanagan said. “It’s important the community is not only aware of ALS as a disease, but that the patients really need our help.”
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