Illinois General Assembly - Full Text of HR0344

HR0344 LRB104 13625 LAW 26254 r

HOUSE RESOLUTION

WHEREAS, Giant Axonal Neuropathy (GAN) is a rare, terminal, inherited neurodegenerative disorder that affects both the central and peripheral nervous systems, leading to progressive muscle weakness, impaired coordination, and other severe symptoms; and

WHEREAS, GAN primarily manifests in early childhood and progressively worsens over time, significantly impacting mobility, motor function, and overall quality of life; and

WHEREAS, GAN is caused by mutations in the GAN gene, which disrupts the proper function of nerve cells, ultimately leading to the deterioration of the nervous system; and

WHEREAS, GAN currently has no cure, and treatment options remain limited to symptom management and supportive care; and

WHEREAS, Approximately 75 known people have been diagnosed with GAN worldwide, including Ethan Tkalec of Riverside; and

WHEREAS, Increased awareness, research funding, and early diagnosis are critical to improving outcomes for individuals affected by GAN and their families; and

WHEREAS, Advocacy organizations, medical researchers, and healthcare providers are working diligently to advance scientific understanding and explore potential therapies for GAN; and

WHEREAS, It is imperative that the State of Illinois recognizes the challenges faced by individuals living with GAN and their caregivers and supports initiatives to enhance research, education, and awareness of this rare disease; therefore, be it

RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE ONE HUNDRED FOURTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that we declare May 28, 2025 as Giant Axonal Neuropathy Awareness Day in the State of Illinois to raise public awareness of Giant Axonal Neuropathy (GAN), encourage research efforts, and support affected individuals and their families; and be it further

RESOLVED, That we encourage the collaboration of public and private entities, healthcare professionals, and research institutions to advance medical research and treatment options for GAN; and be it further

RESOLVED, That a suitable copy of this resolution be presented to organizations dedicated to GAN awareness and advocacy as an expression of the State of Illinois' commitment to improving the lives of those affected by this condition.