Our Story
We are two siblings based in South Windsor, CT, who have had enough of being told there is 'no cure', because of a lack of collective action.
In 2016, the word 'neurofibromatosis' entered our lives when my sister, Shruti (pictured on the left), was diagnosed with NF2.
Since age nine, she's endured six surgeries in seven years due to this rare genetic condition that causes relentless tumor growth along her nerves.
Neurofibromatosis is a rare genetic disorder affecting approximately 1 in 3,000 births worldwide. According to the National Library of Medicine, NF1 reduces life expectancy from 70.1 to 50.4 years. This stark reality means those diagnosed not only endure ongoing suffering but are robbed of the opportunity to live their fullest lives and reach their greatest potential.
Despite its significant impact, NF remains largely unknown to the public. Unlike more widely recognized diseases, NF1 and NF2 consistently slip under the radar of public awareness. While the Department of Defense (DoD) and our government have made unprecedented progress within the last four to five years when it has come to allocating resources for NF, we believe that change can happen so much faster when it is advocated for at the grassroots level.
Because, without it, stories like ours - of families grappling with the daily challenges of NF - go untold.
Stories like Shruti's - of young people facing an uncertain, and often ignored future - rarely reach the public conscience.
And without awareness, there can be no action.
That's why we created the NF Student Alliance, partnering with NF Northeast-- a force for change, allowing us to play a role in over $10,000 dollars being lobbied for supporting NF each year.
We are more than just a community or a blog - we are a platform for change and a voice for those who have been unheard for too long. Join us in our mission.
Together, we can advocate directly for the change we need to see.
Because true change results from a combination of advocacy and action at the highest level, and it starts with all of us.
- Shruti & Soham, Founders of NF Student Alliance
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Project Spotlight
In August of 2024, we met with Lisa Perrone, CT Congressman John Larson’s Director of Constituent Services. During this meeting Ms. Perrone gave us amazing feedback on our NF Pediatric Screening Program initiative, and pointed us towards some great resources to further our fight against NF. It was a wonderful and productive experience, and we would like to sincerely thank Ms. Perrone and Congressman Larson team for giving us the opportunity to talk about the NFSA’s mission.
In September of 2024, we had the opportunity to virtually meet with Sydney Lamb, who works on Senator Blumenthal's health portfolio. She was incredibly helpful and provided a clear path forward regarding our advocacy for NF funding and medical programs in legislation. Our experience was incredibly positive and served as a great example of how far grassroots advocacy can go.
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We believe in the power of student voices to drive meaningful change. NF Student Alliance is committed to mobilizing young advocates across the nation to push for increased NF research funding at state legislatures.
By empowering students to engage with policymakers, we're not just asking for change – we're creating it. Our goal is to transform the landscape of NF research and care through persistent, passionate advocacy at all levels of government.
Advocate 🗣️
We're building more than just a network; we're creating a movement. NF Student Alliance unites passionate changemakers from all walks of life, bound by a common goal: to improve the lives of those affected by NF. Our community is a source of strength, support, and inspiration, where every member's voice is valued and every action, no matter how small, contributes to our collective impact. Together, we're not just facing the challenges of NF – we're overcoming them.
Empower 🫂
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Knowledge is our most powerful tool in the fight against NF. We're committed to educating the public, healthcare providers, and those affected by NF about the realities of living with this condition.
Through comprehensive resources, awareness campaigns, and personal stories, we're working to dispel myths, reduce stigma, and promote early diagnosis and better care. By spreading understanding, we're not just informing – we're transforming perceptions and improving lives.