Neurofibromatosis Midwest

09/15/2025

Do you have questions about NF genetics?

Genetic counselor Jordyn Prell, MS, CGC from the Medical College of Wisconsin may answer them during her session at the 35th Annual NF Midwest iNFo Fair on Saturday, October 25, in Naperville, IL.

Share your questions in the comments or by private message.

Jordyn also supports families through the Neurofibromatosis/RASopathies Clinic at Children’s Wisconsin. She is passionate about making genetics approachable and useful for everyone.

Her talk, “Genetic Testing: Taking a Proactive Step,” will explore:
• How to access testing
• Costs to expect
• Benefits and limitations
• What results can reveal
And More!

This is a chance to learn, connect, and feel supported.

👉 Learn more and register today via the link in comments.

09/12/2025

💙 A huge THANK YOU to Alexion for sponsoring our online programs for the NF community! Your support helps us provide education, resources, and connection to individuals and families affected by NF — no matter where they are. Together, we are making a difference! 🙌✨

09/11/2025

💙 A heartfelt THANK YOU to SpringWorks Therapeutics for sponsoring our upcoming in-person and online programs for those affected by NF and their families. These programs will take place over the next several months into 2026, bringing valuable resources, education, and connection to the NF community — both near and far. Together, we are stronger! 🙌✨

09/10/2025

💙 A big THANK YOU to Alexion for being a proud sponsor of our iNFo Fair 2025! Your support helps us bring education, resources, and hope to the NF community. Together, we’re making a difference! 🙌

09/10/2025

Exciting News for the NF1 Community!

The FDA has expanded approval of Koselugo (selumetinib), an important treatment for plexiform neurofibromas in NF1.

What’s new:

Koselugo is now approved in a granule form, which can make it easier for anyone who has difficulty swallowing pills.

The treatment is now approved for pediatric patients ages 1 and up (previously 2+).

This milestone means that more individuals living with NF1 now have improved access to this important treatment option.

Link to FDA announcement in comments.

09/09/2025

💙 Double the Hope. Double the Impact. 💙
All September, every dollar you give to NF Midwest will be matched dollar-for-dollar up to $10,000! Together we can support families, fund research, and keep fighting for a cure.

👉 Give today by using the link in the comments!

09/09/2025

September is Craniofacial Acceptance Month!

This month, we raise awareness about craniofacial differences and promote kindness, understanding, and inclusion for those who live with them.

For people with neurofibromatosis (NF), craniofacial differences can sometimes occur due to tumors that grow on or around the face and head. These differences may bring unique medical challenges, as well as experiences of stigma or misunderstanding.

Craniofacial Acceptance Month is a reminder that everyone deserves to be seen for who they are, not how they look. It’s about celebrating strength, advocating for acceptance, and building a more inclusive community.

You can show support by:

Learning more about NF and craniofacial conditions

Standing up against stigma and bullying

Encouraging acceptance and compassion in your daily life

Together, we can create a world where differences are embraced and every individual feels valued.

09/08/2025

Congratulations to Rachel Mindrup Many Faces of NF for another exhibit highlighting someone with NF. Thank you for all your hard work!

I'm excited to share that my portrait of Antwan Winkfield was juried into the national 16th Annual Figurative Art Exhibition in Pennsylvania. I hope anyone near Selinsgrove, PA can come and check it out!

09/07/2025

Teachers, Parents, and Leaders, Here’s a Project Your Kids and the Young Adults in Your Lives Will Love!

NF Midwest is inviting youth groups, Scouts, sports teams, high school and college clubs, and National Honor Society chapters to take part in Champions of the Fall!
This is a fun, low-stress way for kids, teens, and young adults to raise awareness about NF, give back to the community, and do something they can be proud of.
From game nights to bake sales to scavenger hunts - and beyond - any idea that unites your group can have an impact!

💙 Make a difference by funding critical research and support programs for individuals affected by NF.

💚 Connect with your community while working toward a common goal.

💙 Have fun while giving back in meaningful ways.

It’s that simple! Together, No one Fights alone.

👉 Learn more and sign up at the link in the first comment!

09/05/2025

At NF Midwest, we believe charity isn’t just about giving money, it’s about building a community where no one faces NF or schwannomatosis alone. Acts of kindness take many forms: listening to a friend, volunteering your time, making a donation, or even stepping up to serve on a committee or our board.

Today is a reminder that together, through big and small acts of generosity, we create strength, hope, and connection so that no one fights alone.

09/04/2025

Back-to-school can bring new challenges for kids with NF. We’ve got a great resource to share—created by our friends at the Children’s Tumor Foundation!

Check out our blog to learn more and download the free NF Parent Guidebook: How to Help Children with Learning Challenges Associated with Neurofibromatosis Type 1 (see comments).

09/03/2025

Thank you to our donors and fundraisers, because of you six kids were able attend the NF session at Camp Brainy Ridge in the Blue Ridge Mountains of Virginia. This year they attended from July 13th to 19th. We look forward to hearing their stories!

Camp will be held July 19-25, 2026 next year! Learn more about camp at https://www.brainyridge.com/nf.