Neurofibromatosis Midwest

12/01/2025

Congratulations to Meghan, our 2025 Windfall Wednesday winner! 🎉

Thank you to everyone who joined in, shared, and showed up with such heart. We appreciate you all!

Together, you helped raise over $5,000 toward our $30,000 year-end goal.

Thanks to the long-time generosity of a dedicated member of our NF Midwest community, every gift given up to $20,000 will be matched, DOUBLING YOUR IMPACT!

For families faced with neurofibromatosis, the journey can be daunting. NF Midwest is dedicated to providing information and hope through our Clinics, Awareness, Research, Education, and Support pillars in Illinois, Indiana, Iowa, Kentucky, Wisconsin, and Missouri.

If you’d like to keep the momentum going, you can:
* Send a check to NF Midwest 473 Dunham Road, Suite 3, St. Charles, IL 60174, and write Year End Appeal on the memo line, so we can include it in our matching gift!
* Give through our safe and secure website www.nfmidwest.org/give
* See if your employer matches gifts using our website https://www.nfmidwest.org/get-involved/ways-to-give/matching-gifts/

Because of you, your gift makes the impossible possible!

11/27/2025

As Thanksgiving arrives, our hearts are full. We’re so grateful for the strength, kindness, and spirit of our NF community. You lift each other up, you show up with courage, and you remind us every day why this mission matters.

This year brought bright spots from Power Hours and Camp NF to new connections at iNFo Fair and growing conversations about care, treatments, and support. Every step forward happened because of you.

Thank you to our families, caregivers, clinicians, researchers, partners, and supporters. We’re truly thankful to walk this journey together.

No one fights alone!

Warmly,
Diana, Ted, Jennifer, Karissa, Joan

11/26/2025

Today’s the day! Who is going to be our winner on Windfall Wednesday and receive a $500 Visa or Amazon gift card right before the holidays?

Enter NOW! https://www.nfmidwest.org/event/500-wednesday-windfall

Donations close at 6 pm CST, and the drawing will take place at 6:30 pm CST!

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

Get your entries in before 6 PM! Good Luck!

11/26/2025

TIME IS RUNNING OUT!
DONATIONS FOR ENTRIES MUST BE MADE BY 6 PM (cst) TOMORROW TO WIN A $500 GIFT CARD!
ENTER TODAY AND SUPPORT NF MIDWEST

Donate to our Windfall Wednesday campaign and receive chances to win a $500 Amazon or Visa gift card to help make your holidays more bright and your pocket less light!

Drawing will be automatic at 6:30 CST, and donations end at 6:00 pm. Donate and get a lot of chances to win:

$100=200 Entries
$50=75 Entries
$25=30 Entries
$10=10 Entries

GET FREE ENTRIES

You can get free entries by signing up for a tracked link and sharing it, and even MORE entries if people use that link to donate!

Scroll down the Windfall page to sign up TO GET FREE entries and get that special link to share.

Every gift moves us closer to a world where no one fights NF alone!

👉 Get in on the action now: www.nfmidwest.org/windfall25

11/24/2025

Giving Tuesday is almost here, and it’s a great chance to lift up families living with NF. NF Midwest is where people turn for support, answers, and a community that truly gets it.

We’re excited to share a special challenge match. An NF community member will match all donations of $100 or more, up to $3,000. Your gift will go twice as far to fuel care, connection, and education across our region.

Your support helps families feel seen, supported, and never alone. Let’s make this Giving Tuesday our strongest yet!

P.S. You don’t have to wait until December 2. Early gifts count toward the match!

Donation link in comments.

11/19/2025

We're excited to announce that the FDA has approved selumetinib (KOSELUGO) for adults with neurofibromatosis type 1 (NF1) who have symptomatic, inoperable plexiform neurofibromas. Previously it was approved only for children.

Read the full FDA announcement via the link in the comments.

Note Added: We're finding there are a lot of questions and curiosity about this announcement. Please, read our reply in the comments. Also, we invite you to use the form link below to provide us with your contact information and put "MEK Interest" in the comments. We will get more information to you, and try to schedule a webinar to answer questions. Your contact information will allow us to let you know when a webinar or any other info is available. https://www.nfmidwest.org/question-or-concern-form/

11/19/2025

With just ONE week left until Windfall Wednesday, one lucky winner will take home a $500 Visa or Amazon gift card on November 26. Will it be you?

Enter Today! https://www.nfmidwest.org/event/500-wednesday-windfall

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

Your support helps families living with NF and schwannomatosis.
And you could walk into the holidays with $500 to put toward a trip, travel, or a little getaway! ✈️🚙🏝️

11/18/2025

Scientists have made a major step forward in NF1 gene therapy, showing strong results in mice using a new “mini-NF1” approach that targets tumors at their source. It’s early, and there’s still a long road before we know if it will work in humans, but it’s an exciting and hopeful development.

Read our short overview of the new research.

A Promising Step Forward: Gene Therapy Progress for NF1 % %

11/18/2025

Health insurance is shifting fast, and the National Organization for Rare Disorders (NORD) has a helpful webinar to walk you through it. On Nov. 19 at 2 p.m. ET, they’ll cover what rare disease families should look for during open enrollment and share tips for choosing a plan that keeps your care and medications on track. This can be especially helpful for people living with neurofibromatosis, schwannomatosis, and other rare conditions who often need coordinated care, access to specialists, and consistent coverage for treatments and monitoring. The session will be recorded if you can’t make it live.

We invite our community to tune in and stay informed. Link in comments to register.

11/17/2025

This is a true story of courage, connection, and hope, made possible by supporters like you.

At NF Midwest, your generosity helps kids and families living with NF get the care, education, and community they need to move forward with confidence.

Take a moment to see the impact you create and the difference you continue to make.

Link in the comments.

11/13/2025

Today is World Kindness Day, a global celebration of the simple but powerful act of choosing kindness. (thebekindpeopleproject.org)

In our NF Midwest family, kindness takes on special meaning:
• It’s offering a listening ear when someone in our community shares their journey.
• It’s the volunteer who shows up to lift spirits at an event.
• It’s the donor who gives from the heart so research and support can move forward.
• It’s the patient who shows strength and the family member who shows compassion.

At NF Midwest we believe that kindness strengthens community, and in turn, a strong community powers our mission to accelerate research, foster connections, and ensure nobody faces neurofibromatosis alone.

Today, let’s celebrate by doing one kind thing, big or small, and inviting someone to join us in the journey. Because when kindness meets purpose, we all go farther together.