Neurofibromatosis Midwest

12/30/2025

We are incredibly excited that we have five Young Adults from NF Midwest will be attending the NF Young Leadership Program in Washington, DC next week. The weeks ends with a NF Congressional briefing.

NF Midwest has been partnering on this awesome program with Little Tumor Foundation and Texas NF Foundation since 2019.

12/26/2025

When a family hears the words neurofibromatosis diagnosis, they often call NF Midwest first. Diana is who they often talk to first. She listens, steadies them, and can help them see what is next.

Because of you, families find trusted care, real information, and ongoing support across our six-state region. You help strengthen clinics, expand awareness, fund research, educate families, and support children and young adults as they grow.

Your year-end gift keeps this work moving forward into 2026 for families who rely on it every day.

👉 Support NF families today: https://give.nfmidwest.org/campaign/742970/donate

12/22/2025

When Ari came home from Camp NF, the first thing she said was,
“I HAVE to go back next year!” 💙

I’m Sheri, Ari’s mom, and that one sentence told me everything.

Camp NF gave Ari a place where she felt understood and confident being herself. Being with other kids who live with NF helped her open up and build friendships that mattered.

This photo captures a big moment. Ari traveled without me for the first time. She wasn’t alone. She was supported. That independence filled me with pride!

I want you to know that YOU made this possible.

NF Midwest is halfway to our $30,000 year-end goal, and gifts are being matched up to $20,000. Your support helps more kids feel safe, confident, and connected.

Because of you, no one fights alone. 💙💚

Neurofibromatosis Midwest is dedicated to the increasing number of men, women and children challenged by neurofibromatosis. Help raise NF support.

12/19/2025

Join NF Midwest and Alexion PEM Joe Booe for a webinar, Introduction to Managing Plexiform Neurofibromas in NF1, on Tuesday, January 13 at 7pm CST.

Registration link and info in the comments.

12/16/2025

People with NF or their caregivers, PLEASE complete the Navigating NF Survey! Your voice can help paint a clearer picture of what life with NF really feels like. We're helping to recruit for this survey. It is not NF Midwest's survey.

We really appreciate your support on this!

[Navigating NF Survey – Fill out form]https://forms.office.com/r/sJFaM4pmph

12/12/2025

💙 𝗬𝗼𝘂 𝗺𝗮𝗸𝗲 𝘁𝗵𝗶𝘀 𝘄𝗼𝗿𝗸 𝗽𝗼𝘀𝘀𝗶𝗯𝗹𝗲. 💙

A mom recently shared with us:

“Just that small help with travel and parking really mattered. It made me feel like someone gets what I’m going through and helps me keep moving forward.”

For many families living with neurofibromatosis (NF), getting to care isn’t simple. Parking fees. Gas. Time off work. The fear of missing an appointment because the budget won’t stretch one more inch.

𝗧𝗵𝗮𝘁’𝘀 𝘄𝗵𝗲𝗿𝗲 𝗬𝗢𝗨 𝗰𝗼𝗺𝗲 𝗶𝗻.

In 2025, donor support made it possible for NF Midwest’s Care Impact Grant to help clinics like Dr. Stefania Maraka’s at the University of Illinois at Chicago—providing parking assistance so families could attend appointments and MRI visits.

✨ 𝗥𝗶𝗴𝗵𝘁 𝗻𝗼𝘄, 𝘆𝗼𝘂𝗿 𝗶𝗺𝗽𝗮𝗰𝘁 𝗰𝗮𝗻 𝗴𝗼 𝗲𝘃𝗲𝗻 𝗳𝘂𝗿𝘁𝗵𝗲𝗿.
A generous donor has offered a Bold (sans): $𝟮𝟬,𝟬𝟬𝟬 𝗠𝗔𝗧𝗖𝗛, meaning your gift today will be 𝘿𝙊𝙐𝘽𝙇𝙀𝘿 for families who count on NF Midwest.

Your generosity removes barriers to care and reminds families they’re not alone.

👉 𝗠𝗮𝗸𝗲 𝘆𝗼𝘂𝗿 𝘆𝗲𝗮𝗿-𝗲𝗻𝗱 𝗴𝗶𝗳𝘁 𝘁𝗼𝗱𝗮𝘆 𝗮𝗻𝗱 𝗱𝗼𝘂𝗯𝗹𝗲 𝘆𝗼𝘂𝗿 𝗶𝗺𝗽𝗮𝗰𝘁.
Link in comments

12/10/2025

Last night’s Winter Warm-Up! was such a bright spot in the middle of this cold week. We appreciate all who came out in the wet weather. We loved that you shared space with us, you filled the NF Midwest office with laughter, and we loved every minute of it!

We had a hot cocoa bar, catered food, great conversations, and a new "Wishes for 2026 board" that is already filling up. Many of you told us at the iNFo Fair that you wanted more in-person events, so this gathering felt like our first step.

If you could not make it, we missed you!
You can still be part of our Wishes for 2026 board.

• Share your wish in the comments
• We will add each one to the board
• We will post more photos as it fills up

More events are on the way, and we cannot wait to see you again soon!

Many thanks to Jimmy John's, Jersey Mike's Subs, and Franky's Red Hots in St. Charles, IL!

12/08/2025

Join NF Midwest and Alexion Patient Education Manager Gina Friesl for a virtual power hour on Navigating Stress and Cultivating Wellness. Gina will break down common stress triggers and symptoms and share helpful techniques for managing them. The power hour takes place Wednesday, December 10 at 7pm CST.

Registration link in the comments.

12/02/2025

Right now, there is a parent who just got an NF diagnosis for their child. They’re scared, they’re searching, and they don’t know what comes next.

Because of you, families can find answers, kids feel supported, and parents feel less alone when they contact NF Midwest.

Due to some donors who have already donated $2K, we are VERY close to unlocking our $3,000 match. We’re looking for the final $1,000 today to release the full match.

Every gift counts! Every dollar matters! And all amounts are doubled today!

This is how your support will have double the impact:
$5 → $10 | $10 → $20 | $25 → $50

We're in the home stretch. Will you help us close it before midnight?
Give today: give.nfmidwest.org/becauseofyou

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!