Neurofibromatosis Midwest

Walk4NF Indianapolis
2022-09-03 10:00 - 13:00 (America/Chicago) | White River State Park, 801 W Washington Street, Indianapolis, IN, 46204, United States
Walk4NF Indianapolis Details
Get ready for the Indianapolis Walk4NF (also known as Great Steps4NF)!
Plus, NF Midwest is celebrating 40 years as a chartered non-profit!
(1) Register below as soon as possible so we know how many t-shirts, volunteers, and food to have. Form a team with your family and friends. Think of a creative team name or use your last name, and elect a captain who will be responsible for exchanging information with team members. Or choose an existing team to join.
(2) Create a fundraising page to start raising funds and awareness for NF! Ask your co-workers and neighbors to help you reach your goals. Printable Forms on the event page will give you everything you need to get started! We’ll be here every step of the way!
(3) Raise awareness and funds by sharing your page and story in every way possible. Social media for sure!! BUT don’t forget about email and snail mail!!
Keep in mind t-shirts are ONLY guaranteed for participants who pre-register at least 3 weeks before the event. There are some fantastic recognition gifts you can earn as you fundraise.
We look forward to seeing you!

SamJam Music & Brewfest
2022-09-24 12:00 - 22:00 (America/Chicago) | Macoupin Fairgrounds, 21368 Rte. 4, Carlinville, IL, 62626, United States
There’s something for everyone at SamJam!
10 Hours of live music to benefit Neurofibromatosis (NF) featuring folk, rock, progressive bluegrass, country, and blues.
The 2022 SamJam Music and Brewfest will be held on Saturday, Sept. 24 from noon until 10 p.m. at the Macoupin County Fairgrounds, just north of Carlinville. The event will feature everything from R&B to country and rock and roll, jazz, and American folk.

Known for top-quality music, SamJam was created in 2014 to honor Sam, who has endured years of struggle with neurofibromatosis (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.

In its first seven editions, SamJam has raised $71,000, with the funds going to NF Midwest an organization that provides research grants and support services in Illinois and five surrounding states.

This year’s version of SamJam features five bands of distinct musical talents, including the closing act, Al Holliday and The East Side Rhythm Band. Based on the Metro East, the band mixes the best elements of rhythm and blues with old-school blues, soul, funk, and jazz.

The band will release their fourth album later this year and has toured across the country, as well as Europe.

Other performers at SamJam include Positively 4th Street of Springfield, which plays everything from ‘30s-style blues to rock, country, originals, Bob Dylan, and Tom Petty, and Isaiah Christian and the Rebel Saints, an up-and-coming country singer from Winchester, Ill.

There’s also Pete Jive, a Naperville performer that presents a mix of American folk, rock, and roots reggae, and One Way Traffic, a St. Louis-based progressive bluegrass group.

Like last year, SamJam will be held outside on the carnival midway of the fairgrounds, with two pole tents and a professional stage. Food trucks, a tub raffle, and a wide selection of beer will also be offered. Camping is also available on the fairgrounds.

Tickets for SamJam are only available at the gate and are $20 for adults and $10 for students, with free admission for 16 and under. Spectators are urged to bring lawn chairs, blankets, and umbrellas. For more information, or to make donations, visit www.SamJam4NF.com or call 217-556-4917.

If you have neurofibromatosis or schwannomatosis contact the event organizers or NF Midwest to receive complementary admission at the gate.

Discussion About Social Skills & Executive Functioning (Monthly Parent's Group)
2022-12-08 20:00 - 21:00 (America/Chicago) | Online
Register or Join
Do you have kids with NF1, NF2-SWN, or Schwannomatosis? Whether they’re grown or still young, join us online on the 2nd Thursday of every month in the evening.
On December 8th, Bonnie Klein-Tasman PhD will be joining us to discuss social skills and executive functioning. Dr. Klein-Tasman is a psychologist at the University of Wisconsin – Milwaukee and director of the Child Neurodevelopment Research Lab and the UWM Child Assessment Clinic. Dr. Klein-Tasman is also an NF1 researcher. She has past and current projects on cognitive and social challenges in children with NF1.
Join us at www.nfmidwest.org/parentsgroup.

NF Young Adult Leadership Program
2023-01-02 08:00 - 2023-01-06 17:00 (America/Chicago)
Are you a young adult living with NF and want to make a difference in your community?

In addition to NF’s clinical impacts, young people with NF or schwannomatosis are faced with the common and often elevated challenges of young adulthood. Yet, resources for this group are virtually nonexistent.
We created the NF Young Adult Leadership Program in collaboration wit The Littlest Tumor Foundation and Texas NF to help NF youth develop critical leadership skills, advocate for NF solutions, educate Congress, and advance NF research.
This five-day program includes workshops with leadership experts and mentors, meetings with Congressional leaders in DC, and two briefings – one in the House and one in the Senate. Young leaders will break-up to visit to all 435 Congressional offices and 100 Senate offices.

The NF Young Adult Leadership Program is an opportunity for NF-affected young adults to learn effective advocacy skills and speak directly to policymakers about NF. The 5-day program is the first of its kind, allowing young adults to make a difference in the NF community.
Program priorities are to create leaders, advance research, and bring new voices to the forefront of advocacy.

Become a leader today.

The 2023 program will be held January 2-6th, 2023 in Washington D.C. Scholarships are available to qualified applicants.

APPLY HERE

Information Session about Classrooms That Care
2023-01-17 18:00 - 19:00 (America/Chicago)
Classrooms that Care is a service-learning program that teaches students and/or educational staff about neurofibromatosis (NF) and allied disorders through educational activities and programming designed to fit into school curriculum standards.
If you have a student with NF, you’re invited to attend the first ever information session about Classrooms that Care the evening of Tuesday, January 17th. Learn more about the resources provided, discuss how to share them with your student’s support team, and ask questions during the Q&A session!
Please register here.

Parent's Group
2023-03-09 20:00 - 21:00 (America/Chicago)
Parents Group meeting for parents of kids with NF1, NF2, or Schwannomatosis. Please register once to attend all future meetings. You aren’t committed to coming to all of them.
Please check back later for times and dates.
Meeting Registration – Zoom

2023 Walk4NF Madison, WI
2023-05-13 09:00 - 13:00 (America/Chicago) | Capital Brewery, 7734 Terrace Avenue , Middleton, WI, 53562, United States
Walk4NF Madison Details
Get ready for the annual Madison Walk4NF!
Plus, NF Midwest is celebrating over 40 years as a chartered non-profit!
(1) Register and learn much more at Walk4NF Madison as soon as possible. T-shirts are only guaranteed to those who register at least two weeks before the events.
(2) Form a team with your family and friends. Think of a creative team name or use your last name and elect a captain who will be responsible for exchanging information with team members. Or choose an existing team to join.
(3) Create a fundraising page to start raising funds and awareness for NF! Ask your co-workers and neighbors to help you reach your goals. Printable Forms (coming soon!) will give you everything you need to get started! We’ll be here every step of the way!
(4) Raise awareness and funds by sharing your page and story in every way possible. Social media for sure!! BUT don’t forget about email and snail mail!!

2023 Walk4NF Indianapolis, IN
2023-05-20 09:00 - 13:00 (America/Chicago) | White River State Park, 801 W Washington Street, Indianapolis, IN, 46204, United States
Walk4NF Indianapolis Details
Get ready for the annual Indianapolis Walk4NF!

Plus, NF Midwest is celebrating over 40 years as a chartered non-profit!

(1) Register and learn much more at Walk4NF Indianapolis as soon as possible. T-shirts are only guaranteed to those who register at least two weeks before the events.

(2) Form a team with your family and friends. Think of a creative team name or use your last name and elect a captain who will be responsible for exchanging information with team members. Or choose an existing team to join.

(3) Create a fundraising page to start raising funds and awareness for NF! Ask your co-workers and neighbors to help you reach your goals. Printable Forms located on the event page will give you everything you need to get started! We’ll be here every step of the way!

(4) Raise awareness and funds by sharing your page and story in every way possible. Social media for sure!! BUT don’t forget about email and snail mail!!

2023 Walk4NF Naperville, IL
2023-06-03 09:00 - 13:00 (America/Chicago) | Naperville Riverwalk, 912 Honorary Sindt Memorial Ct, Naperville, IL, 60540, United States
Walk4NF Naperville Details
Get ready for the 22nd Naperville Walk4NF-the largest walk and party in the park for NF in the country!
Plus, NF Midwest is celebrating over 40 years as a chartered non-profit!
(1) Register and learn much more at Walk4NF Naperville as soon as possible. T-shirts are only guaranteed to those who register at least two weeks before the events.
(2) Form a team with your family and friends. Think of a creative team name or use your last name and elect a captain who will be responsible for exchanging information with team members. Or choose an existing team to join.
(3) Create a fundraising page to start raising funds and awareness for NF! Ask your co-workers and neighbors to help you reach your goals. Printable Forms (coming soon!) will give you everything you need to get started! We’ll be here every step of the way!
(4) Raise awareness and funds by sharing your page and story in every way possible. Social media for sure!! BUT don’t forget about email and snail mail!!

2023 Walk4NF Columbia, MO
2023-06-24 09:00 - 13:00 (America/Chicago) | Stephens Lake Park, Columbia, MO, 2001 E Broadway, Columbia, MO, 65201, United States
Walk4NF Columbia Details
Get ready for the annual Columbia Walk4NF!

Plus, NF Midwest is celebrating over 40 years as a chartered non-profit!

(1) Register and learn much more at Walk4NF Columbia as soon as possible. T-shirts are only guaranteed to those who register at least two weeks before the events.

(2) Form a team with your family and friends. Think of a creative team name or use your last name and elect a captain who will be responsible for exchanging information with team members. Or choose an existing team to join.

(3) Create a fundraising page to start raising funds and awareness for NF! Ask your co-workers and neighbors to help you reach your goals. Printable Forms (coming soon!) will give you everything you need to get started! We’ll be here every step of the way!

(4) Raise awareness and funds by sharing your page and story in every way possible. Social media for sure!! BUT don’t forget about email and snail mail!!

Camp New Friends 2023
2023-07-16 - 2023-07-22 | Blue Ridge School, 273 Mayo Drive, St. George, VA, 22935, United States
Camp New Friends is a neurofibromatosis specific camp for ages 7-17. Camp New Friends offers seven days and six nights of summer fun. Scholarships are available to help with the cost of travel and camp fees to those in the NF Midwest service areas: Illinois, Indiana, Iowa, Kentucky, Wisconsin, and the Eastern half of Missouri. Please visit here for more information.

Free NF1 Plexiform Neurofibroma Educational Virtual Event
2023-07-27 18:00 - 19:00 (America/Los_Angeles), 2023-08-07 19:00 - 20:00 (America/New_York), 2023-08-24 17:00 - 18:00 (America/Chicago) | Virtual
VIEW FLYER REGISTER

NF Young Adult International Summit
2023-07-30 10:00 - 14:00 (America/New_York) | Virtual
REGISTER

Join young adults with NF from around the world at this four hour virtual event. Organized by NF impacted young adults from different countries, the event will consist of educational and community building workshops presented by NF leaders, inspirational speakers, and a panel of young adults.
We’d love to see you take advantage of this once a year opportunity! The NFYA International Summit 2023 will take place via Zoom on July 30.
Reserve your spot today.

Walk4NF End of Summer Virtual Challenge
2023-08-01 00:00 - 2023-09-30 23:59 (America/Chicago) | Virtual
LEARN MORE OR TAKE THE CHALLENGE

Take the Walk4NF Challenge. Walk 25/50/100 miles for NF by September 30th. Earn a 2023 Walk4NF T-Shirt and other appreciation and awareness prizes.

North Shore Century Ride
2023-09-10 00:00 - 23:59 (America/Chicago)
A Collaboration with Children’s Tumor Foundation. The NSC ride is organized by the Evanston Bicycle Club.

Join NF Midwest and CTF on Sunday, September 10th, 2023 at the 38th annual North Shore Century Ride — Chicagoland’s premiere cycling event. Together we’ll raise funds and awareness for neurofibromatosis. There’s a route for everyone. Choose 100 miles, 62 miles, 50 miles, or 25 miles.

You’ll ride through beautiful neighborhoods, view unique architectural treasures, pedal down tree-lined streets and feel the refreshing breezes of Lake Michigan while enjoying the flat to rolling countryside between Chicago and Wisconsin.

REGISTRATION PROCESS

Sign up for the CTF Endurance Program and THEN for the ride. Use the code CTFNSC to receive a 10% discount on the registration free of $40 (this goes up if you register after August 28th). However, the number of riders is capped at 2400 so spots could be gone soon!

Please note (if possible) that you were directed to the event by NF Midwest and let us know you signed up!

STEP 1

Register with NF Endurance – this will give you support in your efforts, add you to the NF Century team, and allow you to create fund raising page. Your registration fee of $40 (includes t-shirt) or $25 (no t-shirt) will go towards your fundraising effort.

Go to nfendurance.org/cyoc

Click REGISTER

Select Join a Team

Choose North Shore CenturyRide NF Endurance Team

Select General Entry (withor without tech shirt)

Click Reserve

Fill out all registration detailsand check out

STEP 2

Register for the North Shore Century Ride

Go to evanstonbikeclub.org/nsc

Click Register Now! You will have to pay a separate fee to the bike club to participate.

Select Registration type(Adult or Child)

Enter all registration details

PDF WITH MORE INFO TO PRINT AND SHARE

Queso for a Cause @ Panchero's
2023-10-19 17:00 - 21:00 (America/Chicago) | Panchero’s Mexican Grill, 2900 Trimble Rd, Columbia, Missouri, 65201
Where: Panchero’s located at 2900 Trimble Rd., Columbia, MO

When: Thursday, October 19th from 5:00 pm to 9:00 pm

Fundraising team Apostolic NFers and Panchero’s Mexican Grill believe in the power of delicious food and giving back to our community. That’s why we’re excited to announce “Queso for a Cause,” a special initiative in partnership with NF Midwest.

On Thursday, October 19th from 5:00 pm to 9:00 pm, every purchase of their mouthwatering food will make a difference whether you are ordering in the restaurant, online, or using the mobile app. For every sale,10% of the proceeds will go directly to NF Midwest, an organization dedicated to supporting individuals and families affected by neurofibromatosis. Team Apostolic NFers will receive credit on their team fundraising page for the Columbia Walk4NF.

Not only will you satisfy your cravings with delicious Mexican fare, but you’ll also contribute to a meaningful cause that’s close to our hearts.

So, grab your friends and family, head over to Panchero’s, and indulge in our delectable queso while supporting NF Midwest. Together, we can make a positive impact on the lives of those affected by neurofibromatosis.

Thank you for helping us make a difference, one queso at a time! 🧀❤️

#QuesoForACause #PancherosCares #SupportNFMidwest

2023 iNFo Fair
2023-10-21 08:00 - 16:00 (America/Chicago)
GO TO REGISTRATION AND DONATION PAGE

In-Person Once Again! We’re So Much Better Together!

A day of education for families and individuals affected by neurofibromatosis, a genetic disorder that causes tumors to grow on nerves throughout the body. This event aims to provide a supportive environment for attendees to learn about the latest advances in research, treatment options, and practical resources for managing the condition. Expert speakers, interactive panels and discussion, and networking opportunities, offer a valuable experience for those impacted by neurofibromatosis to connect with others and gain a deeper understanding of this complex disorder.

Join us for an all day iNFo Fair in Naperville, Illinois on Saturday, October 21st. We are still setting all the topics, however expect topics that teach you things you need to know and chances to socialize and discuss!

LOCATION:

Northern Illinois University – Naperville Campus1120 East Diehl RoadNaperville, IL 60563

TIME:

Continental Breakfast starts at 8:00 am CSTSessions start at 9:00 am CSTDay will end at approximately 4:00 pm CST

TOPICS/SESSIONS

An approximate agenda with session times will be set a week or so before the event. TOPICS ARE NOT YET COMPLETE!

GENERAL TOPICS
NF Overview and Update – Learn about NF1, NF2-related schwannomatosis, and schwannomatosis including new diagnostic criteria, new statistics, and new wording! – Carlos Prada, MD; Lurie Children’s Hospital Neurofibromatosis Program

“Where Does it Hurt?” A Conversation on NF, Mental Health, and Well-Being – Ethan Lester, PhD; Clinical Psychologist; Massachusetts General Hospital

NF1 TOPICS
Cutaneous Neurofibromas vs. Plexiform Neurofibromas. What’s the Difference? – Carlos Romo, MD; ​Neurologist; Johns Hopkins University School of Medicine

Cutaneous Neurofibroma Treatment Options and Research – Mandi Johnson, MBA; Johns Hopkins University School of Medicine

Plexiform Neurofibromas Treatment Options and Research Update – Carlos Romo, MD; ​Neurologist; Johns Hopkins University School of Medicine

Empowering Afternoon Conversations: Perspectives on NF – Patients’ Insights & Parenting Wisdom

❤ What I Know Now That I Wish I Knew Then: Parenting a Child with NF – Gain from the wisdom of experienced parents of children with NF1. Discover valuable insights on many topics as they share their journey, offering support to fellow parents, and building a knowledgeable community.

❤ Navigating NF: Insights from Patients – Helpful vs. Hurtful Experiences – This conversation is meant to help us all gain valuable insight from real experiences of people navigating the complexities of having NF so that we can do better and understand more.

NF2-RELATED SWN TOPICS
Hearing Preservation in NF2 – Konstantina Stankovic, MD, PhD, FACS; Stanford Ear Institute

NF2 Natural History Study Results – Christina Hayes CRNP, National Institutes of Health

Overview of Treatment Options in NF2-Related Schwannomatosis – Carlos Romo, MD; ​Neurologist; Johns Hopkins University School of Medicine

❤ What I Know Now That I Wish I Knew Then – Gain from the wisdom of experienced patients and parents of children with NF2/SWN. Discover valuable insights on many topics as they share their journey, offering support to fellow parents, and building a knowledgeable community.

PRESENTER BIOS

CHRISTINA HAYES, MSN, CRNP

Christi is a family nurse practitioner who has worked with the Surgical Neurology Branch at the National Institutes of Health since 2012. She works with patients with NF2 and other neurosurgical disorders in both inpatient and outpatient settings. She values her role as an associate investigator on the NF2 study and enjoys working with the PI, other investigators, and the multi-disciplinary care team to learn more about NF2 and contribute towards efforts to progress research and improve care.

MANDI JOHNSON, MBA

Mandi serves as Research Coordinator at the Johns Hopkins Department of Dermatology Cutaneous Translational Research Program. Her experience spans various research environments, including a traineeship at the Armed Forces Research Institute of Medical Sciences in Bangkok, Thailand. Additionally, she is recipient of the post-baccalaureate Cancer Research Training Award from the National Institutes of Health, Department of Dermatology.

Currently, she dedicates her efforts to coordinating the Natural History Study of Cutaneous Neurofibromas in People with NF1. This collaborative endeavor unites the fields of Dermatology and Neurology and evaluates how cutaneous neurofibromas develop, progress, and how they affect the quality of life of people living with NF1.

Beyond her research commitments, Mandi is passionate about advocating for and raising awareness of NF1, contributing to its understanding and support.

ETHAN LESTER, PHD

Dr. Ethan Lester is a clinical psychologist at Massachusetts General Hospital, an Assistant Professor at Harvard Medical School, and an affiliated researcher with the Center for Health Outcomes and Interdisciplinary Research. Dr. Lester specializes in behavioral medicine and mental health care for people with neurological illnesses and conducts individual psychotherapy/counseling visits with patients at the hospital. Specific to NF, Dr. Lester was the lead clinician on the Department of Defense Funded Clinical Trial at MGH for adults with NF1, NF2, and Schwannomatosis and is also the creator of the web-platform www.NF-Web.org (click to check it out), funded in part by NF Midwest.

CARLOS PRADA, MD

Dr. Prada finds it an honor to work with children, adults, and families with genetic diseases. His clinical work focuses on improving health for individuals with rare diseases by developing individualized and integrated care across specialties to promote their wellbeing. For 6 years, he co-led the RASopathies program at Cincinnati Children’s Hospital to develop a care-based model on genetic pathways. He has conducted randomized clinical trials of lysosomal storage disorders, neurofibromatosis type 1, RASopathies, mTORopathies, and several natural history studies of genetic disorders in partnership with family groups and foundations.

Dr. Prada joined the faculty at Cincinnati Children’s Hospital Medical Center in 2013. He became director of the RASopathies Program in 2016 and director of the Neurofibromatosis Program in 2020 at Cincinnati Children’s Hospital. In 2021, Dr. Prada joined Lurie Children’s and the Feinberg School of Medicine at Northwestern University as the Division Head of Genetics, Genomics and Metabolism.

CARLOS ROMO, MD

Dr. Romo specializes in the diagnosis and treatment of people with neurofibromatosis, schwannomatosis, and brain tumors. Dr. Romo earned his medical degree from the School of Medicine and Health Sciences at Tecnológico de Monterrey in Mexico and completed his Neurology residency at the University of Arkansas for Medical Sciences, where he served as chief resident. He then completed a Neuro-oncology clinical and research fellowship in a joint program between The Johns Hopkins University and the National Institutes of Health. Dr. Romo additionally trained as a clinical pharmacology fellow at The Johns Hopkins University and completed training on clinical cancer research at the University of Texas MD Anderson Cancer Center. In his research, Dr. Romo studies the natural history and treatments for people with neurofibromatosis. He also studies drug pharmacokinetics and the blood-brain barrier, and investigates better ways to reach tumors in the central nervous system. In addition to patient care and research, Dr. Romo teaches and mentors medical and undergraduate students to help develop a future generation of neurologists.

TINA STANKOVIC, MD, PHD, FACS

Konstantina “Tina” Stankovic, MD, PhD, FACS is the Bertarelli Foundation Professor and Chair of the Department of Otolaryngology – Head & Neck Surgery at Stanford University School of Medicine. She is a Harvard-trained ear and skull-base surgeon and a Massachusetts Institute of Technology-trained auditory neuroscientist. Her clinical focus is in otology and neurotology, and she previously served as Chief of the Division of Otology and Neurotology at Massachusetts Eye and Ear, a teaching hospital of Harvard Medical School. In addition to her clinical and administrative duties, she directs a basic science laboratory focused on improving diagnostics and therapeutics for sensorineural hearing loss. She has initiated and led successful cross departmental, national, and international collaborations to develop and deploy novel molecular diagnostics and therapeutics for hearing loss and otologic diseases in general while educating the next generation of leaders in surgery and science.

Sponsored By

HOTEL INFO
A small block of rooms has been reserved at the Naperville Holiday Inn Express for $135 per night. Rooms must be reserved by September 20th to get that rate.

This hotel is within walking distance of the iNFo Fair Venue.

Please use the link www.nfmidwest.org/2023hotel to make your reservation.

Holiday Inn Express1837 Centre Point CircleNaperville, IL 60563

Join us for a food and socializing on Friday night, October 20th at the Holiday Inn Express in Naperville. We’ll have more information closer to the event. It will probably start around 6 pm and go to 8 pm.

SamJam's BBQ & Boogie
2023-11-18 17:00 - 22:00 (America/Chicago) | The Rustic Venues, 24720 N. Standard City Road, Girard, Illinois, 62640, United States
The music and fun is in November this year! Support the ongoing efforts for NF research and support services for NF patients and their families!

Live music and dinner to benefit Neurofibromatosis (NF) featuring 2 bands, fantastic food from Fat Albert’s BBQ, Caribbean Cruise giveaway, silent auction, cash bar, and more!

5:00 pm: Doors Open

5:30-7:00 pm: Dinner

6:00 pm: As the Crowe Flies (The best of bluegrass)

8:00 pm: Voodoo Players (Mixtape of rock favorites)

SamJam is about a long journey for a man who wants to give back… and pay ahead. Sam Oswald underwent spinal fusion surgery when he was four years old.

Along with the months of recuperation from the surgery and learning to walk again, Sam also learned of the diagnosis that would follow him throughout his life—neurofibromatosis (NF). A funny-sounding affliction, but a neurological disorder that strikes 1 in every 2,500 people. While you may not have heard of NF, it affects more people than Muscular Dystrophy, Tay-Sachs, and Huntington’s disease combined.

Since that early age, Sam has had two brain tumors, shunt revisions, bone grafting on both legs, knee surgery, dermal tumor removal, and eye surgery. Just a few years ago, Sam completed two surgeries for a rare tumor in his leg, radiation, and chemotherapies, and is left with a lower leg that no longer functions.

More recently, Sam has undergone additional surgeries to remove a tumor in his chest and a recurrence of cancer in his leg.

Now, at 38 years old, Sam has much he could complain about, but you won’t hear it. Sam continues to lead a very positive life, live independently, and is a friend to everyone he meets. The years of treatment and courage would not be apparent to people first meeting Sam.

After all this, Sam thinks it’s time to give back… to thank those who have helped and supported him. He also wants to pay it forward so other patients with NF can get the assistance they need, research can continue, and the public can be more aware of this disorder that very well may strike someone you know. One of Sam’s passions is music of all kinds… and that, my friends, was the start of SamJam!

Thanks to our wonderful sponsors, supporters, and everyone who attended, we have been able to raise almost $80,000 for NF Midwest during the first eight SamJams! Join with us to the make SamJam 2023 even better!

#GivingTuesday - The Time is Now
2023-11-28 00:00 - 23:59 (America/Chicago)
“The most beautiful thing about giving is that it can start with just one person, but it can change the lives of many. Join me in making a difference today!”

– Zig Ziglar

Give a Dose of Hope this #GivingTuesday!

It’s that time of year when generosity takes center stage! Giving Tuesday is on Tuesday, November 28th, and we’re calling on all our incredible supporters to join hands and make a difference for NF Midwest.

On this Global Day of Giving, you have the power to bring smiles, hope, and support to individuals and families affected by neurofibromatosis. Your contribution can pave the way for improved clinics, increased awareness, groundbreaking research, and vital education and support in our territory.

This Giving Tuesday let’s unite with a common goal—to transform lives and create a brighter future. Every donation, no matter how big or small, makes a tremendous impact.

Mark your calendars for Giving Tuesday and get ready to be a part of something truly amazing. Together, we can make a world of difference for NF Midwest!

Stay tuned for more updates and ways to get involved. Let’s spread the love and share the hope!

Ways to Help on #GivingTuesday

Our greatest success is raising funds is with your support!

You can donate today by using the donate button below. Please share this campaign with your friends so they can support our cause as well.

DONATE TODAY!!

We encourage you to develop a Facebook Fundraising for Giving Tuesday to support NF Midwest. Invite your friends to join you in supporting the efforts to support those with NF and research to find a cure. There will also be a NF Midwest Facebook Fundraiser setup which you can share with your Facebook friends.

Another way is to direct people to directly support NF Midwest by sharing our The Time is Now campaign link which will be provided soon.

Thank You!

As always, we want to thank you for all you do to support NF Midwest and its mission.

2024 Walk4NF Virtual Challenge
2024-01-01 00:00 - 2024-09-30 00:00 (America/Chicago) | Wherever you live! Whenever you want until Sept. 30, 2024
Walk4NF Virtual Challenge Details
Get ready for this year’s Virtual Challenge!
Plus, NF Midwest is celebrating over 42 years as a chartered non-profit!
(1) Register and learn much more at Walk4NF Virtual Challenge as soon as possible.
(2) Form a team with your family and friends. Think of a creative team name or use your last name and elect a captain who will be responsible for exchanging information with team members. Or choose an existing team to join.
(3) Create a fundraising page to start raising funds and awareness for NF! Ask your co-workers and neighbors to help you reach your goals.
(4) Raise awareness and funds by sharing your page and story in every way possible. Social media for sure!! BUT don’t forget about email and snail mail!!

NF1 PN Educational Event/Living With NF1 PN: How to Be Your Child's Advocate.
2024-03-28 19:00 - 20:00 (America/Chicago)
Gain a new perspective on caring for a child with NF1 PN from this presentation by Regina Zambrano, MD. Learn about NF1 PN, the importance of PN monitoring, and how to build your NF1 PN team.

For more information

Virtual Open Office Hours
2024-04-10 12:30 - 13:30, 2024-04-24 12:30 - 13:30 (America/Chicago)
Looking for a friendly face and a listening ear? Do you have questions about neurofibromatosis, but aren’t sure where to turn? NF Midwest is here for you! We’re excited to offer virtual open office hours, a chance to connect directly with one of our staff in a welcoming online environment.

During these virtual office hours, you can:

Get moral support: Navigating NF can be challenging. Our staff is here to offer encouragement and support.

Find resources: Need help locating resources or a physician we will help to point you in the right direction.

Much more: Dealing with a situation or have a question and not sure where to start? We may not have the answer to everything, but we might be able to connect you to someone who does.

Others may also be in the Zoom chat. If you would like a private meeting, please reach out to Sarah.

2024 Walk4NF Columbia, MO
2024-04-20 09:00 - 13:00 (America/Chicago) | Stephens Lake Park, Columbia, MO, 2001 E Broadway, Columbia, MO, 65201, United States
Walk4NF Columbia Details
Get ready for the annual Columbia Walk4NF!
Plus, NF Midwest is celebrating over 42 years as a chartered non-profit!
(1) Register and learn much more at Walk4NF Columbia as soon as possible. T-shirts are only guaranteed to those who register at least two weeks before the events.
(2) Form a team with your family and friends. Think of a creative team name or use your last name and elect a captain who will be responsible for exchanging information with team members. Or choose an existing team to join.
(3) Create a fundraising page to start raising funds and awareness for NF! Ask your co-workers and neighbors to help you reach your goals. Printable Forms will give you everything you need to get started! We’ll be here every step of the way!
(4) Raise awareness and funds by sharing your page and story in every way possible. Social media for sure!! BUT don’t forget about email and snail mail!!

NF Midwest Parent Group Chat
2024-04-25 18:30 - 19:30 (America/Chicago)
Designed for parents with a child of any age with NF, this virtual chat provides a dedicated space for sharing insights and connecting with others who comprehend the unique joys and concerns of having a child with neurofibromatosis.

NF Awareness Event
2024-05-01 18:00 - 20:00 (America/Chicago) | Harp and Fiddle, 110 Main Street, Park Ridge, Illinois, 60068
Join NF Midwest and Children’s Tumor Foundation for appetizers and wonderful conversation to celebrate the kickoff to NF Awareness month. Click here to register.

NF1 PN Educational Event/Living With NF1 PN: How to Be Your Child's Advocate.
2024-05-02 18:00 - 19:00 (America/Chicago)
Gain a new perspective on caring for a child with NF1 PN from this presentation. Learn more about NF1 PN, the importance of PN monitoring and how to build your NF1 PN team.

For more information

NF1 PN Educational Event/All about NF1, PN, and a treatment option.
2024-05-09 18:00 - 19:00 (America/Chicago)
Learn about Koselugo and the results seen in children with NF1 PN. Gain access to support programs to help you and your family in your journey.

For more information
