I love this narrator trend that has been taking over the past few weeks 💕 I had to use it to show what being involved in NF1 research and advocacy looks like. Last year I flew to Chicago for a full-body MRI as part of a landmark NF1 study and found out I had 13 internal tumors I didn’t even know were there. Two weeks ago I drove back for part two. Staying involved in research like this matters. Advocacy matters. And yes, I made the most of my time in the city, espresso martinis includef
Some of the most common questions people with NF get are surprisingly offensive, even when they come from a place of curiosity.
For example, “Are you contagious?” No, NF is not contagious. It’s a genetic condition that you’re inherited from a parent or it happens spontaneously meaning there is no family history. As in, it can happen to literally anyone.
Then, there’s “Can’t you just have surgery to remove the tumors?” While surgery is an option in some cases, it’s not as simple as yes or no. Every case of NF is unique, and not all tumors can be removed. It’s a much more complicated, case-by-case decision. Even if tumors are removed, the tumors could grow back and more could grow in its place. When someone without NF casually suggests surgery like it’s a quick fix… It’s not that simple. Not every tumor can or should be removed. Location, type, risks, and recurrence all matter. What sounds like a simple solution is actually a complicated decision. So technically, yes, some tumors can be removed, but no, it’s not always possible, necessary, or safe.
Finally, “Can’t diet control it?” This is a huge misconception. Regarding NF, there are no flare-ups linked to food or other outside factors. Neurofibromatosis happens because of a change in a gene that’s supposed to make a protein called neurofibromin. This protein helps keep cell growth under control. Without enough working neurofibromin, cells can grow and divide too much, which is why tumors can develop along nerves throughout the body.
Questions like these highlight just how much awareness and education are still needed, but we’re working on changing that
🌟 I WON AN AWARD!! 🌟
Back in June, the NF Summit took place in Washington DC. I wasn’t able to attend this year because the timing just didn’t work out. It was such a busy summer. Even though I couldn’t be there in person, something really special still happened.
Each year, the NF Summit closes with the Make NF Visible Awards Ceremony. This is one of the most inspiring parts of the entire event. The ceremony celebrates individuals and groups who are making a real impact by raising awareness of NF in their local communities, across the country, and even around the world. It’s such a beautiful way to shine a spotlight on the many volunteers, clinicians, researchers, community partners, and patient advocates who pour their hearts into this cause all year long. The award categories are designed to recognize so many different kinds of contributions, whether through advocacy, science, creativity, or community support.
That moment made me feel so seen and appreciated. This award is called the Sunshine Award, and that honestly makes it even more meaningful to me. Sunshine is warmth, hope, and light, and I love knowing that the work I’m doing is seen as bringing that kind of energy to others.
I am beyond grateful to CTF and to this community for this recognition. Advocacy has become such an important part of my life, and this award motivates me to keep showing up, speaking out, and finding creative ways to make NF visible. Whether that’s through social media, sharing my personal journey, or using my voice in important spaces like Capitol Hill and FDA meetings, I want to keep making a difference.
Most of all, I feel so inspired by all the incredible people I’ve met in this community. The connections, support, and shared strength remind me every single day why this work matters so much.
My heart is so full, and I can’t wait to keep spreading awareness in every way I can!
I can’t believe it’s been a week since Opening Day for the @lexingtonlegends They won their game with an epic comeback!!
Baseball season is the best season! After all, there are only two seasons: baseball and winter
Use code “LEX26” for $10 tickets!
Never have to worry about parking again!!
Lexington just got a whole lot more connected.
@_lextran just launched LexRide, a seasonal shuttle designed to get you between the Distillery District, Downtown, and the Warehouse Block for just $1.00 each way.
Details
•Thursday to Saturday (April to October) 4pm-12am
•Every 12–15 mins $1.00 (Cash or Lextran pass)
I took a preview with @visitlex , and the convenience is a total game-changer for a night out. I despise having to find parking, and this will make it much more convenient!!
Download the MyStop app to find your closest stop and get ready to ride!
I had the Squeakers from @drakescomeplay around St. Patrick’s Day, and I’m still thinking about them. I wish they were on the regular menu 🤤
Squeakers (Squeaky fresh white cheddar cheese nuggets, seasoned with Sriracha dry rub and golden-fried; served with
Sriracha-garlic-honey mayo and green onion)
