Meet the Advocate: Heather Marsden, PhD

Author: Heather Marsden, PhD

Published On: 02/25/2022

I was so excited to be a part of the NF Network Advocacy Program’s Virtual Hill Visit Days this year.  I am just starting to get involved with NF support groups, trying to find families like mine to make connections, and this felt like a wonderful cause to be a part of.

When Kim asked me if I would like to participate, I was quite nervous initially. I have never dealt with government processes or met with congressional representatives or their staff, so this was a huge learning experience for me.  However, I was assigned a wonderful mentor that helped with every meeting, and I feel like the training given to all advocates by the NF Network was very informative and helpful.  Now that I have completed all my congressional meetings, I feel so honored that I was able to be a part of something like this.  

My daughter Chloe is 10 years old, and she has NF1.  We of course have been dealing with multiple health issues throughout her life.  It is a huge part of our life, but I had no idea where funding like this came from or how important it is to write your representatives and make your voice heard!  I look forward to being a part of the NF Network Advocacy Program for years to come!

One memorable event for me this year was while on a call with a representative's staffer. We were discussing how sensory issues can manifest in many ways in NF patients, and I was describing how my daughter cannot have any tags on her clothing.  That moment really resonated with the staffer as her mother was the same way. She knew how hard it made daily life and how much this impacts those suffering from nerve pain and sensory processing disorders, such as NF.  You never know what you will say that will resonate with someone and what they will connect with.

Now that I have been involved in the NF Network Advocacy Program, I look forward to being a voice for my daughter as well as other patients with NF in America. I want to help ensure we continue to receive this needed funding to help develop new therapies to make their quality of life the best it can be!  We have come so far due to the research these funds facilitate, but we still have so far to go.  We will never stop—until we end NF!

Since 1996, the NF Network Advocacy Program has played a vital role in securing over $382M in federal research funding for NF. Learn more about the NF Network Advocacy Program.