Give NF

10/08/2026

We’ve been quiet, but we haven’t been sitting still 💙 2027 is shaping up to be a big year for GiveNF. From a night with Grand Rapids Griffins to our biggest fundraiser yet, the GiveNF Summer Bash at Wildwood Family Farms

Save the dates and follow along!

🏒 March 26, 2027
☀️July 18, 2027

10/05/2026

2027 is going to be a big year for GiveNF. 💙

We’ve been a little quiet over the last few months, but there has been plenty happening behind the scenes.

We’re excited to share that we already have two big GiveNF events on the calendar for 2027:
🏒 GiveNF at the Griffins — March 26, 2027
🎶 GiveNF Summer Bash — July 18, 2027 at Wildwood Family Farms

Both events will bring together the NF community, raise awareness, and help us continue supporting meaningful NF research and resources.

There’s a lot more to share in the coming months, and we can’t wait to bring you along.
Save the dates, 2027 is going to be big!

10/02/2026

We have not one but TWO big announcements dropping on our Instagram and Facebook this Monday! We have been hard at work here at GiveNF, and after the success of our past events we can’t wait to share what we have in store! Thank you to those who have been here since the beginning, and thank you to those who have found GiveNF along the way 💙 Everything we do is to raise awareness and support Neurofibromatosis research 🔬

08/20/2026

NF fighters and advocates, Sarah Powlison and Amanda Day Rose recently published a children's book titled Certainly, Sonder. The book is inspired by their NF journey and is dedicated to the NF Community 💙💚

You can read more here: https://www.nfnetwork.org/pages-news/author-sarah-powlison-brings-hope-to-life-in-certainly-sonder/

And purchase your copy here: https://nicelittleskiff.com/shop/

Visit the post for more.

08/04/2026

Reminiscing on our past events this year ✨Planning is underway for 2027! Comment below what type of events you’d like to see from GiveNF!

07/28/2026

Caroline’s artwork is currently on display in an art exhibit in NYC alongside other NF superheroes thanks to SketchNF !

The auction is LIVE until tomorrow: https://e.givesmart.com/events/PJG/i/_All/

SketchNF was started by Sahil Shah after growing up with a diagnosis of NF1. This organization is dedicated to raising funds and creating a network for pediatric NF patients one sketch at a time. Their mission is to empower children with NF by allowing them to share their stories and hopes through the form of art.

Help Sketch NF hit their goal of $7,500 and “Go bid!”

06/15/2026

On May 17th, World NF1 Awareness Day, GiveNF hosted Walk 4 NF 💚 The free event brought 100 individuals together to raise awareness for Neurofibromatosis. Walk 4 NF featured fun challenges along the walk, Dunk Our President, trophies, food and much more!

Thanks to our sponsors and support of the community, Walk 4 NF raised $3,000 for NF Michigan's Medical Travel Grant! The Grant provides financial assistance to Michigan families needing to travel to a specialist or hospital for necessary medical care to treat neurofibromatosis.

We are so thankful for our sponsors and those who attended, you helped make our first Community Action event a success 💙

06/04/2026

Caroline participated in Sketch NF this year and was thrilled to join their community of NF artists. 🎨

Caroline's artwork, along with other participants, will be featured in an art gallery in July in New York and then auctioned off. Funds from the auction are donated directly to NF research and support groups through Neurofibromatosis Network.

SketchNF was started by Sahil Shah after growing up with a diagnosis of NF1. This organization is dedicated to raising funds and creating a network for pediatric NF patients one sketch at a time. Their mission is to empower children with NF by allowing them to share their stories and hopes through the form of art.

Anyone can participate in bidding and we will be sure to post when the auction is live! 💙💚

Find out more about SketchNF here: www.sketchnf.org

05/22/2026

Today, May 22nd, is World NF2 Related Schwannomatosis Day (NF2-SWN)

What is NF2-SWN? 💙

This type of NF occurs in about 1 in 25,000 people. NF2-SWN is characterized by hearing loss or tinnitus (ringing in the ears), which is the result of benign tumors that form on the vestibular nerve in the brain. The hallmark of NF2-SWN is the appearance of bilateral vestibular schwannomas (benign tumors), on both sides of the vestibular nerve.
People with NF2-SWN may also develop schwannomas in other parts of the body or may develop other types of benign brain or spinal tumors. NF2-related schwannomatosis was formerly called neurofibromatosis type 2, or NF2, but was reclassified under the umbrella term schwannomatosis in 2022. NF2-SWN is usually diagnosed in young adulthood.

Want to learn more about NF2?
Here is a great organization that focuses on NF2 Related Schwannomatosis research and cure:
https://curenf2.org

05/19/2026

May is NF Awareness Month. We are sharing facts about Neurofibromatosis. These facts can be shared to help us spread awareness and teach others about NF!

❓How common is NF❓

NF (all types) affects approximately 1 in every 2,000 births, or approximately 4 million people worldwide. Anyone can be born with NF, and it affects all genders, races, and ethnicities equally. It is more common than cystic fibrosis, Duchenne muscular dystrophy, and Huntington's disease combined. However, most people have never heard of this genetic disorder.

Therefore, it is commonly referred to as, "the most common genetic disorder you've never heard of."
That lack of awareness is exactly why we do what we do at GiveNF. By sharing facts, hosting events, and building community, we hope to help more people understand NF. We believe that awareness leads to impact, support for families, research, and ultimately a cure.