March 21, 2022

PA Rare Disease Leader Profile: Dr. Nicole Henwood of NF2 BioSolutions

This is the eighth in a series of profiles of the leaders of rare disease organizations based in Pennsylvania.

  1. Full Name: Nicole Henwood, MD
  1. Current Hometown: West Chester, PA
  1. Organization’s Name: NF2 BioSolutions
  1. Mission of the Organization: We are a non-profit organization seeking a cure or preventative treatment for neurofibromatosis type 2 (NF2) by vigorously supporting and advancing existing and next-generation biomedical technologies, such as gene therapy and immunotherapy.
  1. Rare Disease(s) Covered by the Organization: Neurofibromatosis type 2 (NF2)
  1. Your Role at the Organization: Founder, President and CEO
  1. How You Got Involved with the Organization: I founded this organization back in 2018 after my son A.J. was diagnosed with NF2. 
  1. What You Are Most Proud of or What You Are Excited About Doing Next: Getting to bring awareness and hope to families that are touched by NF2. Being the bridge between institutions and the patients by creating a network of families and pushing research forward with the resources we have.
  1. What You Find Most Rewarding in Your Role: In the midst of the fight against this terrible disease, the people and friendships I’ve found have been the most rewarding.
  1. What You Find Most Challenging in Your Role: Rare disease in general is understudied and underfunded so it can be challenging to get institutions and researchers interested. Funding has been our biggest challenge but we have found that is we break it up into smaller goals for each project we can be pretty successful. 
  1. Resources You Recommend to Other Rare Disease Advocates: National Organization for Rare Disorders (NORD), and finding an online forum of others affected by the same rare disease. Facebook has been a game changer for us. 
  1. Any Advice You’d Like to Share with the Rare Disease Community in PA: Do not get discouraged if you hit a roadblock or two or 10. There will be lots of setbacks but all we need is one treatment that works so cast a wide net and never give up.
  1. Links to Organization’s Social Media Accounts
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