Memorializing Governor Kathy Hochul to proclaim October 25-31, 2025, as Epidermolysis Bullosa Awareness Week in the State of New York, more commonly known as Butterfly Children Awareness Week
Assembly Resolution No. 589 is a nonbinding memorializing resolution that asks Governor Kathy Hochul to proclaim October 25-31, 2025, as Epidermolysis Bullosa Awareness Week in New York State, also known as Butterfly Children Awareness Week. The resolution is intended to raise public awareness of epidermolysis bullosa (EB), a rare genetic connective tissue disorder that causes extremely fragile skin, recurrent blistering, chronic pain, scarring, and in severe cases disability or early death.
The measure describes EB’s types, prevalence, symptoms, complications, and the lack of a cure, emphasizing the burdens on patients and caregivers. It highlights the need for better public understanding, improved medical knowledge, adequate wound-care supplies, and continued research into therapies and a cure. The resolution also notes that many severe cases require specialized care and that access to appropriate treatment can be limited by insurance coverage and the scarcity of experienced medical facilities.
Because this is a memorializing resolution, it does not amend the New York State Consolidated Laws, create a new program, or impose regulatory requirements. Its practical effect is symbolic: if the Governor issues the proclamation, state recognition would designate a week for public education and awareness about EB, potentially encouraging outreach by health advocates, medical providers, and affected families. The resolution may also help elevate attention to insurance coverage, specialized care access, and research needs for rare disease patients and caregivers.
The tone of the resolution is strongly supportive and compassionate, with no recorded opposition in the provided materials. It frames EB as a serious, often devastating condition and presents the awareness week as a needed public-health recognition effort. There are no committee transcripts or votes indicating controversy, and the bill appears to be a ceremonial measure likely to receive broad sympathy.
No specific points of contention are reflected in the available record. The resolution does, however, implicitly raise issues that could be debated in a broader policy context, including insurance coverage for wound-care supplies, access to specialized treatment centers, physician awareness, and the adequacy of support for rare disease research. Those concerns are described as problems affecting patients and families, but no opposing viewpoint is documented here.