Assemblyman John Mikulin (R,C-Bethpage), Assemblyman Michael Durso (R-Massapequa Park), Assemblyman Doug Smith (R,C-Holbrook), Nassau County Legislator James D. Kennedy, representatives from the New York Blood Center and the Norton Family all spoke at a press conference at the Massapequa Fire Department on First Responders Day on Tuesday, Oct. 28, 2025. This press conference served two purposes: to highlight Madeline Norton’s story, a young girl who at just 6 months old was diagnosed with PKAN, a rare disease with no cure; and to recognize the service and sacrifice of our courageous first responders who save lives each day.

Madeline’s Mission, a social media and fundraising campaign, was started by Madeline’s parents, Gerard and Kaitlin Norton, to raise awareness and support life-saving PKAN research to give Madeline and children like her the best life possible. Legislators in Albany are also working hard to advance rare disease research by fighting to establish a Rare Disease Advisory Council in New York state. By promoting the establishment of this council, New York is taking leadership in giving rare disease patients a stronger voice.

In honor of Madeline and First Responders Day, Mikulin asserts whether it is a family navigating the challenges of a rare disease or a firefighter rushing into danger, both deserve to know their community and leaders stand with them.

“Raising awareness and doing what we can to support PKAN research will help save lives,” said Mikulin. “I was proud to join fellow state leaders, representatives from the New York Blood Center, fire department members and the Norton family to highlight Madeline’s Mission and First Responders Day. Public outreach events like these are essential to bringing communities together to improve public health and safety statewide.”

“Madeline’s story reminds us that even in the face of unimaginable challenges, love and determination can make a difference,” said Assemblyman Michael Durso. “Through Madeline’s Mission, her family turned heartbreak into action, shining a light on PKAN and rallying our community and first responders to stand with them in the fight for a cure.”

“On National First Responders Day, we honor the brave men and women who run toward danger when others run away,” said Assemblywoman Jodi Giglio. “Our police officers, firefighters, EMTs and other first responders embody the very best of our communities with courage, compassion and an unwavering commitment to protecting others. I want to extend my deepest gratitude to all who put their lives on the line each day to keep our families and neighborhoods safe. New York is stronger because of your service and sacrifice.”

“First Responders Day reminds us all to say thank you to the incredible men and women who work tirelessly each day to keep us safe,” said Assemblyman Doug Smith. “This First Responders Day was especially significant as we gathered to honor young Madeline Norton and her courage battling PKAN. It is heartwarming to see so many state and local leaders and members of our community on Long Island come together to support the Norton Family and first responders across the state. Addressing public health and safety issues in New York state remain top priorities of mine.”