Neurofibromatosis Midwest

Neurofibromatosis Midwest Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on th

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/

Are you and your HCP often in agreement with your treatment plan for neurofibromatosis type 1 (NF1) or neurofibromatosis...
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!

On World NF1 Breast Cancer Awareness Day, we stand together — 10 organizations united to raise awareness, support resear...
10/17/2025

On World NF1 Breast Cancer Awareness Day, we stand together — 10 organizations united to raise awareness, support research, and honor every person impacted by NF1 and breast cancer.

Texas Neurofibromatosis Foundation Littlest Tumor Foundation Children's Tumor Foundation Seventeen22 Foundation The NF Team Neurofibromatosis Northeast NF Association of Ireland pennysflight Childhood Tumour Trust

After ten amazing years, SamJam has wrapped up its final show and made one last generous gift to NF Midwest. This belove...
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).

If you have a child or young adult with NF,  be sure to join us on October 29th for a Power Hour on Transitioning to Ear...
10/14/2025

If you have a child or young adult with NF, be sure to join us on October 29th for a Power Hour on Transitioning to Early Adulthood presented by Joe Booe, Patient Education Manager from Alexion Pharmaceuticals.

What you'll learn:
-How to create a plan for this change
-Differences between healthcare for children vs. adults
-How to move from pediatric to adult care

Registration in comments.

"Mahlatse’s journey reflects the resilience of a young boy facing extraordinary challenges and the remarkable impact tha...
10/13/2025

"Mahlatse’s journey reflects the resilience of a young boy facing extraordinary challenges and the remarkable impact that partnerships between schools, government, civil society, and the media can achieve – showing that a single story, when amplified and acted upon, can rally an entire community to bring hope and dignity to a child in need."

https://www.goodthingsguy.com/people/mahlatse-marema-surgery-day-booked/

For ten years, SamJam brought people together through music and kindness to support families living with NF. From all of...
10/10/2025

For ten years, SamJam brought people together through music and kindness to support families living with NF. From all of us at NF Midwest, THANK YOU for every dollar, every note, and every bit of heart you’ve shared!!!

Please join us in thanking the SamJam team by giving this post a like or sharing a note of appreciation below.

SAMJAM RAISED $102,000 IN
REMARKABLE TEN-YEAR RUN

Proceeds Went to Research, Services for People with NF

By Tom Emery

​CARLINVILLE – Throughout its ten-year run, the SamJam concert series became a cherished annual event in Macoupin County. The concerts helped a lot of people, too.

​SanJam4NF, Inc., the organization that mounted the SamJam concerts, recently announced that the final concert, held in April, resulted in a $10,000 donation to NF Midwest.

​With that gift, the organization exceeded its decade-long goal, contributing a total of $102,000 to support research and services for people living with neurofibromatosis (NF).

​The SamJam event was created in 2014 to honor Sam Oswald, a 40-year-old Carlinville resident who has endured years of struggle with NF, which affects 1 in every 2,500 worldwide.

​NF is most often noticed in childhood or early adulthood, and appears equally across sexes, races, and ethnic groups. Though less familiar to the general public, more patients suffer from NF than muscular dystrophy, Tay-Sachs disease, and Huntington’s disease combined.

Over the past ten years, SamJam became a beloved community tradition, raising awareness of NF as it drew support from across Illinois and beyond.

All proceeds from SamJam have supported NF Midwest, a nonprofit dedicated to improving the lives of children, adults, and families affected by NF in Illinois, Indiana, Iowa, Kentucky, Wisconsin, and eastern Missouri.

The success of SamJam is cause for celebration, and Peter Oswald, Sam’s father and the festival organizer, looks back with tremendous gratitude.
“The 2025 SamJam’s Finale marks the end of a ten-year run,” said Peter Oswald. “With rising expenses and volunteer demands, it became increasingly difficult to continue. But we are deeply grateful for the support we received from our community, sponsors, and donors throughout the years.”

Those sentiments are echoed by Peter Oswald II, Sam’s brother and a fellow organizer. “What started as a small local celebration grew into a larger annual event,” he said. “Our sponsors and donors have been incredibly generous, and we’re proud to have combined great music with a meaningful cause."

​Throughout its ten years, SamJam hosted 38 bands and 161 musicians, presenting 66 hours of live progressive bluegrass, Americana, and blues on stage at the Macoupin County Fairgrounds near Carlinville and The Rustic Venues, near Girard. Artists came from across the Midwest and as far away as Colorado, Tennessee, and New York to perform.

Sam Oswald’s story remained at the heart of the festival. Since he was diagnosed with NF at age four, Sam has battled spinal fusion, two brain tumors, shunt revisions, bone grafting on both legs, knee surgery, dermal tumor removal, and eye surgery.

​Despite facing numerous surgeries, chemotherapy, and ongoing medical challenges, Sam has continued to live independently, and inspire others with his resilience and positivity. He says that giving back was the message of SamJam.

​“Supporting SamJam has been about more than just great music,” said Sam Oswald. “It’s been about standing with patients and families dealing with neurofibromatosis.

​“I’ve considered myself to be very lucky with a supportive family and friends,” continued Sam. “I’m proud that our supporters have helped us reach such a great fundraising goal, and we know the funds raised will continue to make a real difference in the lives of those facing NF.”

​The board of directors of SamJam4NF, Inc. were integral in managing and organizing the annual events. The board includes Peter Oswald, Steve Boente, Lee LoBue, Peter Oswald II, Rick Fehr, and Jono Verticchio.

​The 2025 SamJam’s Finale was made possible by generous sponsors, including Wall Street Financial Group, The Goodman Agency, CNB Bank & Trust, Verticchio Law Office, Carlinville CPA Group, and Carlin Villa Motel. Player sponsors were Carlinville Eye Care, Heinz Furniture, Main Street Florist, Sleepy Dino Books, Crowe Boot & Shoe Co., Kahl’s Greenhouse, Starr’s Primal Meats, and Mark Oswald, RE/MAX Innovative.

​To continue supporting NF research and patient services, donations can be made directly to NF Midwest at www.nfmidwest.org.

​Photo: Peter Oswald, left, and Sam Oswald prepare a $10,000 donation for NF Midwest, culminating a successful ten-year run for the SamJam music event that raised $102,000.

Today, October 10, is World Mental Health Day. It is a time to raise awareness about mental health and support efforts t...
10/10/2025

Today, October 10, is World Mental Health Day. It is a time to raise awareness about mental health and support efforts to improve it worldwide. There is no health without mental health. For individuals living with chronic conditions like neurofibromatosis (NF) and schwannomatosis (SWN), challenges such as anxiety and depression may be more common. Living with a chronic illness can take both an emotional and physical toll, which makes mental health care and support all the more important.

We’ve shared links to mental health resources and where to find help in the comments below.

Today is World Sight Day. Many people living with neurofibromatosis (NF) or schwannomatosis (SWN) experience vision chal...
10/09/2025

Today is World Sight Day. Many people living with neurofibromatosis (NF) or schwannomatosis (SWN) experience vision challenges, including vision loss or blindness, due to tumors or other symptoms.

World Sight Day raises awareness about blindness and vision impairment and highlights the importance of making eye care accessible, available, and affordable for all.

Tomorrow, Thursday, October 9th is DAF Day!Celebrate by making a difference for families affected by neurofibromatosis a...
10/08/2025

Tomorrow, Thursday, October 9th is DAF Day!

Celebrate by making a difference for families affected by neurofibromatosis and schwannomatosis (NF) through your Donor-Advised Fund (DAF).

A grant to Neurofibromatosis Midwest helps provide clinics, awareness, research, education, and support — bringing hope and connection to people who need it most.

How to Give Through Your DAF:

1. Recommend a grant to Neurofibromatosis Midwest
2. EIN (Tax ID): 22-2580173
3. Include “DAF Day” in the notes or designation

Every DAF gift helps move us closer to better care, stronger communities, and new possibilities for those living with NF.

Together, we make sure No one Fights alone.

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473 Dunham Road, Ste 3
Saint Charles, IL
60174

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