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Committee advances resolution designating May 2025 Ehlers‑Danlos awareness month
Summary
The Senate Committee on Rules moved House Concurrent Resolution 4 to the Senate floor with a recommendation to adopt; HCR 4 would designate May 2025 as Ehlers‑Danlos syndromes and hypermobility spectrum disorders awareness month and drew testimony from patients and medical professionals.
The Senate Committee on Rules on March 24 voted to send House Concurrent Resolution 4 to the Senate floor with a recommendation to adopt. HCR 4 would designate May 2025 as Ehlers‑Danlos syndromes (EDS) and hypermobility spectrum disorders awareness month; committee materials list no fiscal or revenue impact.
Rep. Emily McIntyre (House District 56), who introduced the measure in committee, said she would not take long and that the “real heroes” of the testimony would be patients and caregivers. Members of the public and medical community gave first‑person testimony about living with EDS and the condition’s effects on multiple body systems.
Wendy Bernard, a resident of Chiloquin, described decades of undiagnosed symptoms before being told in 2011 by a researcher she met that she had EDS. Bernard testified about joint instability, chronic pain and fluctuating mobility, saying, “We do not make up our pain” and urging the committee to approve HCR 4 to increase clinician awareness.
Dr. Christine Gleason, who identified herself as living with EDS, described the disorder as “a genetic connective tissue disorder that affects every system in my body,” and detailed clinical complications such as intracranial hypertension and blood‑vessel fragility that limit routine diagnostic and treatment options. She told the committee delays in diagnosis had worsened her condition and said greater provider education could reduce harm for patients and families.
Committee members expressed support for the resolution and appreciation for the testimonies. One member asked why the measure was in Rules rather than the Senate Health Committee; Rep. McIntyre responded that she expected follow‑on policy work to come to a healthcare committee in the future and that the resolution is an interim step to raise awareness.
In the work session the committee voted to move HCR 4 to the floor with a “B — Adopted” recommendation. The roll call recorded aye votes from a majority of committee members present, and the motion passed.
