NF
Resources
COMMUNITY
OUR STORIES
Sarah, 41
Hartford, CT
OR WRITE TO US:
When I lecture to first-year med students to educate them about neurofibromatosis type 1 (NF1), I tell them that NF1 provides a grab-bag of surprises. You could know you have NF1, be chugging along with your life and then get surprised by a brain tumor diagnosis, as what happened to me in 2010. On the other hand, you can be like a friend of mine who didn't know she had NF1 until she was pregnant with her first child and started growing neurofibromas.
In 1980, based off a large cafe au lait spot that appeared and my mother's observations my pediatrician told my mom it was possible I had a condition called neurofibromatosis. (This is a gosh-darn miracle because NF1 wasn't discovered on chromosome 17 until 1990.) I was officially diagnosed in 1988.
Growing up, I had a 504 designation, challenges with graphomotor skills, and took PT and OT. Bike riding posed a never-ending challenge and is something I struggled with well into adulthood. Beyond those differences, the challenges I experienced were the traditional challenges of adolescence, most notably the desire to fit in.
Upon college graduation, I moved to Los Angeles. There, I worked at nearly every movie studio, served on the board of directors for a local non-profit, tried my hand at stand-up comedy, and started endurance running to raise money for the Children's Tumor Foundation. In 2010 my life with small hurdles got turned upside down when I had emergency brain surgery to remove an NF-related brain tumor. After a full-recovery, career change, and taking up ballroom dancing, relocating back to Connecticut to spend more time with family, my life got turned upside down again with the recent discovery of a new brain tumor... and now the story continues.
John, 50
Boston, MA
John is an avid cyclist and here is his story for the Coast to The Cure
The main reason that I am riding is my daughter Carin. Carin is 20 years old and she means the absolute world to me. When Carin was 3 months old, her mother was bathing Carin and she noticed a café-au-lait, a birthmark, on Carin’s elbow and with my family history of NF that is all that was needed to make a diagnosis.
When Carin was around 5, they did a routine MRI of her brain and the doctors found an optic glioma (a benign tumor on the optic nerve). As of right now, the tumor is not causing any major problems but this is something that is going to have to be monitored for the rest of Carin’s life. I couldn’t be more grateful to the NF specialist team at Boston Children’s Hospital for their treatment of Carin.
Some of my other family members that have been affected by NF include my mother who died when I was just 3 ½, my brother Eddie (he died in 1998 from a brain tumor that was caused by NF), my older brother David, and my nephew Chris.
This is the second year I have formed my own team called F'N NF. (Because NF F'N sucks)
Name, age
City
TEMPORARY IMAGE
I'm a paragraph. Click here to add your own text and edit me. It’s easy. Just click “Edit Text” or double click me and you can start adding your own content and make changes to the font. Feel free to drag and drop me anywhere you like on your page. I’m a great place for you to tell a story and let your users know a little more about you.
This is a great space to write long text about your company and your services. You can use this space to go into a little more detail about your company. Talk about your team and what services you provide. Tell your visitors the story of how you came up with the idea for your business and what makes you different from your competitors. Make your company stand out and show your visitors who you are. Tip: Add your own image by double clicking the image and clicking Change Image. This is a great space to write long text about your company and your services. You can use this space to go into a little more detail about your company. Talk about your team and what services you provide. Tell your visitors the story of how you came up with the idea for your business and what makes you different from your competitors. Make your company stand out and show your visitors who you are. Tip: Add your own image by double clicking the image and clicking Change Image.
Name, age
City
.png)
TEMPORARY IMAGE
I'm a paragraph. Click here to add your own text and edit me. It’s easy. Just click “Edit Text” or double click me and you can start adding your own content and make changes to the font. Feel free to drag and drop me anywhere you like on your page. I’m a great place for you to tell a story and let your users know a little more about you.
This is a great space to write long text about your company and your services. You can use this space to go into a little more detail about your company. Talk about your team and what services you provide. Tell your visitors the story of how you came up with the idea for your business and what makes you different from your competitors. Make your company stand out and show your visitors who you are. Tip: Add your own image by double clicking the image and clicking Change Image. This is a great space to write long text about your company and your services. You can use this space to go into a little more detail about your company. Talk about your team and what services you provide. Tell your visitors the story of how you came up with the idea for your business and what makes you different from your competitors. Make your company stand out and show your visitors who you are. Tip: Add your own image by double clicking the image and clicking Change Image.