Madison, a young person living in Las Vegas, is new to Next Step but has already found her voice and started setting personal goals through our programs.
At first, Madison was unsure if Next Step could help her as a young person living with Stiff Person Syndrome, a rare condition that affects fewer than 5,000 people in our country. She thought she had it all figured out with her life with a rare disease. But after attending Next Step’s program, something shifted. Madison found a safe space to express her anger and frustration toward her rare disease – something she had struggled to do. She learned that it’s okay to be angry, but she learned how to channel that energy into making something meaningful. With Kimberly, she wrote and recorded the original song, ‘This Is Our Fight’, that speaks to others living with rare diseases, showing her strength and determination to help others.
Whether it’s setting achievable goals or learning valuable life skills like interview techniques or self-advocacy skills, Madison is taking steps to build the life she wants, even in the face of her condition. At Next Step she isn’t just told what to do to achieve her goals – she is given the tools, skills and knowledge to move forward on her own.
Since joining Next Step in January 2025, Madison has already experienced virtual offerings in our community, music and mentorship programs from her home out West. Madison’s message to others in the rare disease community considering Next Step:
“Just try it out. You never know which program will help you the most. Whether it’s community support, music, or mentorship, Next Step will give you the tools to thrive.”
We are so proud of Madison’s journey and her courage to speak out, not just for herself, but for everyone facing the challenges of living with a rare disease. She is a true inspiration to us all.
Thank you to our incredible community for supporting Next Step every day, especially on Rare Disease Day. Your support makes stories like Madison’s possible.
Listen to Madison’s original song, ‘This Is Our Fight’, below! Nice work, Madison! We are so grateful to have you in the Next Step community!
