Neurofibromatosis Midwest

11/10/2025

It’s National Epilepsy Awareness Month! People with NF1 may be at a higher risk of developing epilepsy. Learn more about how epilepsy and NF1 connect, the signs to watch for, and where to find help in updated blog.

Link in comments.

11/09/2025

"This collaboration shows what’s possible when our NF partners share their insight and passion. I’m proud of this collective effort and the impact it can have on care!" - Diana Haberkamp, Executive Director

11/07/2025

11/07/2025

Join the NF Collective for an exclusive webinar on Thursday, Nov 13, 2025, at 4 PM ET to learn about MEK inhibitors for the treatment of plexiform tumors in people with NF Type 1.

Hear from Dr. David Viskochil, MD, PhD, and guest speakers as they break down the journey from early trials to FDA approval, share new research, and feature patient voices.

🎓 Perfect for patients, families, and healthcare professionals who want to better understand MEK inhibitors and the future of NF treatment.

👉 See registration link in comments.

11/06/2025

Windfall Wednesday on a Thursday? We’re calling it being fashionably late!

On Wednesday, November 26th, just before Thanksgiving, Black Friday, and Cyber Monday, one lucky winner will take home a $500 Visa gift card to help with holiday expenses or a little extra cheer!

💙 $10 gives you 10 chances
💚 $25 gives you 30
💙 $50 gives you 75
💚$100 gives you 200

Help support families living with NF and schwannomatosis, and you might walk into Thanksgiving with an extra $500 for groceries, travel, or treats!

🎁 Get ready for a little holiday windfall! On Wednesday, November 26th—just before Thanksgiving, Black Friday, and Cyber Monday—one lucky...

11/04/2025

Milwaukee, mark your calendars! On Nov. 8, National Organization for Rare Disorders, Inc. (NORD) is hosting the Living Rare, Living Stronger meeting, bringing together the rare disease community to share resources, connect, and learn. Dr. Donald Basel, director of the NF Clinic in Milwaukee, will be presenting.

NF families attending: be sure to snap some photos and share your experience!

Learn more via the link in the comments.

Last chance to join us—spread the word! Secure your FREE spot at Living Rare, Living Stronger in now: https://livingrare.org/ 🦓

Spend Saturday, Nov. 8, learning and connecting with NORD and the rare disease community at the Milwaukee County Zoo.

Highlights include:

• “Advancing Rare Disease Care and Research in Wisconsin” — Learn how a NORD Rare Disease Center of Excellence can be a resource for your community. Featuring experts from Children's Wisconsin, Medical College of Wisconsin, and University of Wisconsin-Madison.

• Educational sessions offering practical tools for patients and caregivers

• A chance to “Find Your Village” and connect with others who understand your journey

FREE registration for rare disease patients and caregivers. Register today: https://livingrare.org/

11/03/2025

Celebrating a Decade of Dedication!

For more than ten years, Steve Reason has championed NF Midwest through the John Deere Classic nonprofit Birdies for Charity program, raising an incredible $26,000 since 2012.

Each year, Steve’s time, enthusiasm, and community spirit have created a powerful tradition of support for families affected by neurofibromatosis.

Thank you, Steve, for your years of generosity and heart! You’ve made an amazing impact and helped keep NF Midwest’s mission moving forward in a fun and creative way.

A big thank-you also goes to Smart Lexus of Quad Cities , John Deere , the John Deere Classic, and FedEx for making the Birdies for Charity program possible.

10/30/2025

What an incredible day at 𝗶𝗡𝗙𝗼 𝗙𝗮𝗶𝗿 𝟮𝟬𝟮𝟱! 💙
A huge thank-you to everyone who attended, to our amazing co-chairs 𝗗𝗿. 𝗗𝗮𝗺𝗼𝗱𝗵𝗮𝗿𝗮𝗻 𝗮𝗻𝗱 𝗗𝗿. 𝗣𝘆𝘁𝗲𝗹, and to our sponsors 𝗔𝗹𝗲𝘅𝗶𝗼𝗻 𝗮𝗻𝗱 𝗦𝗽𝗿𝗶𝗻𝗴𝗪𝗼𝗿𝗸𝘀 𝗧𝗵𝗲𝗿𝗮𝗽𝗲𝘂𝘁𝗶𝗰𝘀 for making it all possible.

🎬 Catch the energy and excitement in our 2-minute highlight reel!

10/27/2025

Don't miss our virtual Power Hour on Transitioning to Adult Care this Wednesday, October 29th at 7pm CST. This topic is relevant to anyone with a child/teen who may be transitioning to adult care in the future, even if it may be years.

Registration and more information: https://www.nfmidwest.org/event/transitioning-to-adult-care/

10/21/2025

Are you and your HCP often in agreement with your treatment plan for neurofibromatosis type 1 (NF1) or neurofibromatosis type 1 with plexiform neurofibromas (NF1-PN) or are there times when you feel misunderstood? Clear communication is key to a successful patient/caregiver and HCP relationship, but are there aspects of our care management that each of us can work to improve upon? In collaboration with Springworks Therapeutics, we surveyed patients, caregivers, and HCPs about their perspectives on patient symptoms, the emotional and mental burden, approaches to treatment management, and unmet needs of NF1 and NF1-PN.

Click the link here https://www.nfmidwest.org/challenges-of-managing-nf1-pn/ to discover patient/caregiver and HCP reactions!

10/15/2025

After ten amazing years, SamJam has wrapped up its final show and made one last generous gift to NF Midwest. This beloved event brought people together through music, community, and giving back. We’re so thankful for the Oswald family and everyone who made it such a success.

There is an amazing newspaper write-up about SamJam’s inspiring run and lasting impact. Read it now in our latest blog (link in comments).