PHOTO: State Reps. Angela Witwer (Delta Township) and Mike Mueller (Linden) with the Majewski family and other Rare Disease Day advocates in the Michigan Capitol Building on Feb. 26, 2026.

 

Witwer Introduces Rare Disease Day Resolution, Honoring Michigan Family’s Continued Advocacy

Michigan legislator recognized the lives and advocacy of families living with rare diseases, urging action to advance research and diagnosis of rare diseases

 

LANSING, Mich., Feb. 26, 2026 — State Rep. Angela Witwer (Delta Township) introduced and spoke to her resolution today declaring Feb. 28, 2026, as Rare Disease Day in the state of Michigan. With 1 in 10 Michiganders living with a rare disease, the resolution honors the individuals and families navigating these conditions who have long advocated for greater representation in medical research, funding to increase diagnosis and access to care, and public awareness.

“While rare diseases are uncommon, awareness and reliable access to care should not be,” Witwer said. “Rare Disease Day is a time to recognize the experiences of the thousands of our neighbors in Michigan living with rare conditions every day. These individuals are underrepresented in medical research and often can’t even get a diagnosis or adequate care. On Feb. 28 and beyond we acknowledge their continued strength, and recommit to ensuring every person can receive the health care they need.”

During her speech, Witwer highlighted the stories of individuals like Max Majewski, a bright four-year-old boy living with an ultra-rare disease called Childhood-Onset, De Novo Spastic Paraplegia Type 4 (SPG4), and his family, who have given him unconditional support. His mother, Liz Majewski, has committed to a life of advocacy at The Lilly and Blair Foundation where she’s helped advance research, elevate the voices of rare disease families and build pathways for collaboration between scientists, clinicians and parents. Witwer honored their stories as she acknowledged a group of families navigating rare diseases who attended the session from the balcony of the House floor.

“The story of young Max and his mother, Liz, shows what it means to do everything in your power to ensure a bright future for your child, and for families across our state,” Witwer continued. “It is important to recognize all the parents, family members and loved ones of individuals with rare diseases who are truly the foundation of their care. They deserve to know that their state leaders won’t allow them to continue shouldering the fight for more funding, diagnosis and care alone. This resolution is about honoring, but it is also a call to action.”

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