HOUSE RESOLUTION RECOGNIZING MAY 27, 2025, AS "ALS AWARENESS DAY" IN THE STATE OF RHODE ISLAND

2025 Regular Session Introduced by Edith Ajello and 9 co-sponsors

Designates May 27, 2025 as ALS Awareness Day in Rhode Island and asks residents to support ALS United RI, join the Soak Challenge, and fund ALS research.

05/27/2025 House read and passed

Recognizing May 27, 2025 as "ALS Awareness Day" in Rhode Island

Purpose and intent

Designates May 27, 2025 as “ALS Awareness Day” in the State of Rhode Island.

Encourages Rhode Islanders to learn about ALS, support those affected, and participate in efforts to find a cure.

Commends ALS United Rhode Island (ALS United RI) for its work aiding individuals and families impacted by ALS.

Background and context

ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig’s Disease, is a progressive neurodegenerative disease affecting nerve cells in the brain and spinal cord, leading to muscle weakness, paralysis, and respiratory failure.

There is no known cure; life expectancy after diagnosis is typically two to five years.

nationally, more than 5,000 people are diagnosed annually; tens of thousands live with ALS at any given time.

In Rhode Island, ALS United RI is the state’s sole nonprofit dedicated to supporting people with ALS, offering care and support services (including a multidisciplinary clinic and support groups), advocacy, and investments in research and clinical trials.

Local context cited: in Pawtucket, five individuals are living with ALS, and five families have lost a loved one to ALS in the past year.

Key provisions

Formal recognition of May 27, 2025 as “ALS Awareness Day” in Rhode Island.

Commendation of ALS United RI for its ongoing service to patients, families, and the broader ALS community.

A public invitation to Rhode Islanders to participate in the ALS United RI Soak Challenge (part of the organization’s fundraising and awareness efforts) on June 1, 2025, or to record and share their own Soak Challenge and make a donation in support of ALS United RI.

Authorization for the Secretary of State to transmit a certified copy of the resolution to ALS United Rhode Island.

Who is affected

Individuals living with ALS and their families in Rhode Island.

ALS United RI and its supporters, volunteers, and donors.

Rhode Island residents invited to participate in awareness and fundraising activities.

No state fiscal impact or new regulatory obligations are attached to this resolution.

Procedural and timeline aspects

Introduced: May 27, 2025.

Status: House read and passed on May 27, 2025.

As a resolution, it expresses recognition and public support rather than creating new laws or expenditures.

The Soak Challenge date referenced for participation: June 1, 2025.

The Secretary of State is tasked with delivering a certified copy of the resolution to ALS United RI.

Bottom line

HR 6366 is a symbolic, non-fiscal resolution recognizing ALS Awareness Day, honoring ALS United RI, and mobilizing public participation and fundraising through the Soak Challenge to support ALS research and patient care in Rhode Island.

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