Thank you to everyone who helped raise awareness for neurofibromatosis (NF) during May!
This year, NF Midwest families and advocates helped bring NF Awareness Month into communities across our six-state region. Through state and local proclamations, more people had the opportunity to learn about neurofibromatosis and recognize the families who live with NF every day.
Proclamations matter. They help make NF more visible. They give families a chance to share their stories. And they remind local and state leaders that people affected by NF are part of their communities.
We are grateful to the advocates and families who helped make these recognitions possible.
Illinois
Adelaide Ralston
Adelaide, NF young adult leader, advocated for a proclamation making May NF Awareness month in her hometown of Geneva, IL. Other NF community members joined her at a presentation by Mayor Kevin Burns.
Amanda Orth
Amanda Orth went above and beyond to spread neurofibromatosis awareness across Illinois during NF Awareness Month.
Her efforts helped bring NF awareness to leaders in Chicago, Aurora, and across the state, including:
- Mayor John Laesch of Aurora, Illinois
- Governor J. B. Pritzker, State of Illinois
- Mayor Brandon Johnson of Chicago, Illinois
Patricia Klein
Patricia championed the cause and received a proclamation in her hometown declaring May as NF Awareness Month. Patricia was recognized by Mayor Robert Straz of Palos Heights, Illinois. She invited another NF family to join them in receiving the proclamation (not pictured).
Indiana
Lily Whitehurst
Lily, NF young adult leader, pushed to get a proclamation in Indianapolis, IN. The city declared May 17th NF Awareness Day. She was recognized by Mayor Joe Hogsett.
Iowa
Amy Wilkie
Amy, NF young adult leader, led the effort to secure a proclamation declaring May 17th NF Awareness Day in her hometown of Cedar Rapids, IA. She was recognized by Mayor Tiffany O’Donnell.
Kentucky
Hunter Knowles
Hunter, NF young adult leader, worked hard to bring NF Awareness Month to her town of Madisonville, KY. She secured a proclamation and was recognized by Mayor Kevin Cotton.
Missouri
Cheyanne Tappana
Cheyenne made the case for the NF cause and secured a proclamation declaring May 17th NF Awareness Day in the state of Missouri. She was recognized by Governor Mike Kehoe.
David Woods and family
David Woods and his family, especially his son Austin, went above and beyond to spread neurofibromatosis awareness in the St. Louis area during NF Awareness Month.
Their efforts helped bring NF awareness to both local and state leaders, including:
- St. Louis County Executive Sam Page proclaiming May 17–23, 2026, as NF Awareness Week
- A proclamation presentation with Mayor Cara Spencer of St. Louis
- Austin receiving the Missouri state pin and the Mayor’s challenge coin
- A special proclamation recognizing Austin and his advocacy efforts in Missouri
Wisconsin
Valencia Nelson
Valencia, NF young adult leader, led the effort to secure a proclamation declaring May NF Awareness Month in her town of Milwaukee, WI. She was recognized by Mayor Cavalier Johnson.
Together, these recognitions helped bring NF awareness to city halls, state offices, and communities across the Midwest.
Thank you to every advocate, family member, and community leader who helped make NF more visible this May. Because of you, more people had the opportunity to learn, ask questions, and understand that no one fights alone.
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