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  • Writer's pictureAmy Cothren

May is Neurofibromatosis (NF) Awareness Month

Our Story

In honor of NF Awareness Month, which drives awareness and education around neurofibromatosis (NF), I want to share my own story about this rare genetic disorder.

In the fall of 2019, my middle daughter Olivia, who was three at the time, received a diagnosis for Neurofibromatosis Type 1. As you can imagine, it was a devastating diagnosis for our family. In true Amy fashion, I channeled my fear into action. So, while working with the brilliant folks at Seattle Children’s Hospital, I also did a ton of research and found a community of parents who understood what I was going through. NF Moms Rock is a private Facebook group that helped me navigate the heavy emotional process this life-changing news meant for the family.

Around that time, I connected with Christa Castanon, a mom who also has a daughter with the same diagnosis. She joined me on the Mom: In-Process Podcast

(you can listen to the full episode here), to talk about our daughters’, and how NF impacts them, us as parents, and our other children. Christa is a powerful advocate in the NF community, and her successful fundraising efforts and actions supported the organization of the Seattle NF Walk.

I really encourage you to listen to the full podcast, even if you don’t have a loved one with NF. Not only does it shine a light on this genetic disorder, but we also share insights about the importance of building a community and how self-care enables us to be at our best, mentally, physically and emotionally so we can support our children. I feel the sentiment and advice can apply to any mom with children who have received life-altering diagnoses.

At this time, there is no cure for NF, which is why it’s so important to educate people about the condition and raise money for research so we can continue to improve treatments.

Please take a moment to learn more about this genetic disorder and join our fight to spread awareness about NF and its treatments.

What is Neurofibromatosis?

A nervous system disorder that causes tumors to grow throughout the body. Most tumors are not cancerous but can cause an array of problems that limit everyday typical functioning or can lead to death. It is estimated that 1 in 3,000 people are affected by NF.

Who is Affected by NF?

According to the Children’s Tumor Foundation website, half of the people who develop NF1 or NF2 inherit it from a parent, others develop it by chance as the result of a spontaneous change in a specific gene in an egg or sperm cell. Every person affected by NF1 or NF2 has a 50% chance of passing the condition onto their offspring.

Learn more

You can learn more about neurofibromatosis and the Shine A Light on NF Walk by visiting the Children's Tumor Foundation or by listening to the Mom: In-Process podcast episode Making NF Visible with Christa Castanon.


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