TESTIMONIALS
Real World NF Heroes
"I just wanted to say how inspiring it is to see you bringing awareness to this important cause. As someone with NF-1 myself, I truly appreciate the courage and strength it takes to speak out and advocate for others. Thank you for making a difference and giving hope to so many people like me."
BHANU A
iOD Developer
Bengaluru, India
“I can’t stress enough the importance of raising awareness about research and finding better treatments for neurofibromatosis (NF). There is no cure for this genetic disorder that affects over 100,000 Americans! With only a few limited treatments in existence, we need to ensure that our medical and science community strives to create options that improve the quality of life for all who live with NF.”
ANNE PATTERSON
Director of Patient & Clinic Outreach, NF Northeast
Buffalo, NY
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Because change starts with us.
Advocate
Our Advocacy Mission: Driving Change for the NF Community
At the NF Student Alliance, we believe that meaningful change starts with bold action. Right now, we're laying the groundwork for impactful advocacy that will resonate throughout the nation.
Here's what we will be working towards:
• Creating Opportunities: Empowering other youth in our community to fundraise and advocate for NF is a huge priority for us, and establishing opportunities such as school-wide fundraisers and events at health fairs is essential for building awareness and fostering community engagement around NF.
• Promoting a Pediatric NF Screening Program: We’re working with state legislators to establish funding infrastructure for an early NF screening program for young children to diagnose NF earlier in life. By doing this, existing treatment for NF can be exponentially more effective and can manage symptoms before invasive procedures become necessary.
• Building Legislative Relationships: Currently, we're focusing on building relationships with key legislators in Connecticut. Our goal is to secure meetings with at least five state representatives or senators who sit on health-related committees. These meetings will allow us to share our stories, present our bill proposal, and gain support for our cause.
