Connection to CF

When my niece Patricia Rose was born seven years ago, our family was filled with joy. What we could not have imagined was how much she would teach us about strength, resilience, and the power of hope. Patricia’s journey with cystic fibrosis began before she was even born. This genetic disease affects the lungs and other vital organs, and requires constant care and vigilance. At first, the diagnosis felt overwhelming. The daily treatments, medications, and constant attention to her health revealed the immense challenges faced by families living with CF. Yet through it all, Patricia has remained a source of light and inspiration. Her laughter, energy, and determination remind us that this disease does not define her spirit. Because of remarkable advancements in research and innovative treatments like Trikafta, there is more hope today than ever before. These breakthroughs have transformed what life with CF can look like, but our work is far from over. Continued support and advocacy are essential to ensure that every child living with cystic fibrosis has the opportunity to grow, thrive, and dream without limits. Patricia inspires me every day to contribute to that future, and to stand behind the mission to find a cure for cystic fibrosis once and for all.

Join Me in the Fight for a Cure

The Cystic Fibrosis Foundation is driving the research and innovation that will change the medications and treatments for those with CF. Seeing Patricia face each day with courage and joy is a constant reminder of why this work matters. Supporting this cause helps give every child with CF the chance to thrive, and that is a mission worth standing behind.

About Me

Madeline is a board certified music therapist who owns her own private practice, Here With You LLC. Within this practice she facilitates individual music experiences with all ages and abilities through music focusing on their individualized goals. Madeline currently has a client base of children and adults with developmental disabilities and medical needs and continues to be open to all populations. Madeline is also a child life specialist at Stony Brook Children's Hospital where she works primarily in the operating room. She provides procedural support, medical education, and medical play to pediatric patients who are undergoing surgery. Madeline received a Bachelors of Science in Music Therapy with a Minor in Psychology and Concentration in Piano  at SUNY Fredonia as well as a Masters of Science in Child Life at Texas Woman's University.