Neurofibromatosis Midwest

Walk4NF YOUR WAY Columbia, MO
2021-05-01 10:00 - 13:00 (America/Chicago)
Walk Your Way Columbia Details
1. Choose your place and people to walk with
Our Columbia walk is on this year! We’ll be walking at Stephens Lake Park. If you’re uncomfortable and want to socially distance we invite you to join us virtually that day or at one of our virtual events which include Madison, WI on May 15th and Naperville, IL June 1st.
2. Register; Order T-shirts; Fundraise
Register as soon as possible as we plan to have challenges, games, and updates until the event. Participation is free however if you or your teammates want t-shirts, you must raise $100 or pay $25 for a t-shirt ($15 for kids).
When signing up, 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.
You’ll find everything you need including donation forms, fundraising ideas, and more on the registration site.
3. May 1st walk
Join us in Stephens Lake Park the morning of the walk. Check-in will start at 10:00.

NF Power Hour-Meet the Docs from Indiana University
2021-05-05 18:30 - 19:30 (America/Chicago) | Online
Join NF Midwest for a Q&A and casual conversation with NF physicians from Indiana University and Riley Hospital for Children. These are physicians who are part of the pediatric NF clinic and include a neurologist who is seeing adults with NF. Scheduled to attend are…
Michael Ferguson, MD, MS
Assistant Professor, Department of Pediatrics
Indiana University School of Medicine and Riley Hospital for Children
Steven Rhodes, M.D., Ph.D.
Fellow, Pediatric Hematology-Oncology
Francis S. Collins Scholar in Neurofibromatosis Clinical
and Translational Research
Indiana University School of Medicine and Riley Hospital for Children
Kathryn Nevel, MD
Assistant Professor of Neurology – Indiana University Health

Parent Group Meeting with Genetics Discussion
2021-05-13 20:00 - 21:00 (America/Chicago) | Online
If you’re a parent of a child with neurofibromatosis type 1, type 2, or schwannomatosis you’re welcome to join our parent group which meets online on the 2nd Thursday of every month at 8 PM CST. Even if your child is grown, you’re welcome to join us and share your wisdom. We will often have special guests and special topics and we hope to always have time to express concerns and/or share stories.
May 13th’s meeting will include a short visit by Allison (Goetsch) Weisman, MS, CGC a Genetic Counselor from Lurie Children’s Hospital of Chicago. Allison will take questions about genetics and NF.
Note, NF Midwest serves Illinois, Indiana, Iowa, Kentucky, Missouri, and Wisconsin. We invite people from other areas to attend, however, if the group gets large we may have to restrict participation to our area. Also, some topics or areas of support may not apply if you’re not from our area.

Walk4NF YOUR WAY Madison, WI
2021-05-15 10:00 - 13:00 (America/Chicago)
Walk Your Way Madison Details
1. Choose your place and people to walk with
Our Madison walk is on this year, except WHERE you walk and HOW you walk is up to you! Maybe you want to walk like a duck around a pond or backward down your street?
Plan to walk somewhere, some way, with someone(s) on the morning of May 15th within the social distancing recommendations of your community and in a way in which you feel safe. For instance, you could have a nice crowd at your house, join another team at a park or forest preserve, or walk around the block with close family.
2. Register; Order tshirts; Fundraise
Register as soon as possible as we plan to have challenges, games, and updates until the event. Participation is free (unless you want to charge for YOUR walk) however if you or your teammates want t-shirts, you must raise $100 or pay $25 for a t-shirt ($15 for kids).
When signing up, 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.
You’ll find everything you need including donation forms, fundraising ideas, and more on the registration site.
3. Arrange to get tshirts/goodies
T-shirts will be available for pick-up or possibly delivery a week before from the office. We will also be in Madison on Friday and t-shirts may be picked up then. We also hope to have other goodies to give you!
4. Buy raffle tickets
Several days before the walk we will unveil raffle prizes online and allow for raffle ticket purchases online (or when you get your t-shirts).
5. May 15th walk and join us virtually (or in person)
You’ll also be able to join us virtually for raffle and prizes (including team with most flair). Sign-up, make your plans and will have more details soon.
On the morning of the walk, we’ll set up somewhere in the Madison area. We’ll have a room open online starting a 10 AM for walkers and teams to drop in and you’ll be invited to post videos, photos, and comments on Facebook as well. At NOON we’ll draw raffle winners online and crown the team with the most “flair”, as well as acknowledge our top fundraisers.

NF Open Chat
2021-05-18 18:30 - 19:30 (America/Chicago) | Online
A casual online get together to chat, catch up, share experiences and resources, and ask questions within the NF Midwest community or to NF Midwest.

Parent Group Meeting
2021-06-10 20:00 - 21:00, 2022-03-10 20:00 - 21:00 (America/Chicago) | Online
If you’re a parent of a child with neurofibromatosis type 1, type 2, or schwannomatosis you’re welcome to join our parent group which meets online on the 2nd Thursday of every month at 8 PM CST. Even if your child is grown, you’re welcome to join us and share your wisdom. We will often have special guests and special topics and we hope to always have time to express concerns and/or share stories.
Note, NF Midwest serves Illinois, Indiana, Iowa, Kentucky, Missouri, and Wisconsin. We invite people from other areas to attend, however, if the group gets large we may have to restrict participation to our area. Also, some topics or areas of support may not apply if you’re not from our area.

Camp New Friends 2021
2021-06-26 - 2021-06-30 | Blue Ridge School, 273 Mayo Drive, St. George, VA, 22935, United States
Camp New Friends, run by Brainy Camps from the Children’s National Medical center has redesigned its programming this summer to creatively mitigate COVID risk and ensure safe participation in their various camps. For 2021, there will be four different options for participation available depending on whether a child is vaccinated or not. The Camp New Friends programming will run from July 10—July 14th. NF Midwest will once again provide funding to Brainy Camps to assist campers from our region but you must apply through Brainy Camps. Please contact us if you’d like more information.

We’ve summarized the options here, however, you can learn MUCH more and verify information as it may be changing at www.brainycamps.com.

Program
Length
Date
Vaccine Req.
CamperCost
CITCost

Weekend Getaway
2 days
June 26-27
No
$300

5-Day Residential
5 Days
June 26-30
Yes
$850
$650

Hybrid Weekend/3 Day Virtual
5 Days
June 26-27
No
$550
$450

Virtual Only
3 Days
July 12 –14
No
$250

Hand to Heart Art 4NF
2021-07-07 - 2021-09-02
Kalona is selling her art and plants to support NF1. Her granddaughter has neurofibromatosis and I am trying to help by creating art and selling plants.

Community Celebrathon
2021-10-17 17:00 - 18:30 (America/Chicago) | Online
Join us to celebrate the people, the programs, and the supporters of NF Midwest. It will be a casual hour or so with a drawing for great prizes and an unveiling of our top fundraising team and the walk t-shirt colors they selected for next year!

Purchase entries for amazing prizes here.

Join us for the NF Community Celebrathon on the 17th on Zoom at www.nfmidwest.org/celebrathon or on our Facebook page at www.facebook.com/nfmidwest. You don’t need a Facebook account!

Virtual Neurofibromatosis iNFo Fair
2021-11-13 09:00 - 16:00 (America/Chicago) | Online
NF Midwest, Texas NF, NF Northeast, and The Littlest Tumor Foundation present an online day of learning for the NF community. This event is designed for, and by, patients and families affected by neurofibromatosis type 1 and neurofibromatosis type 2. Look for a separate event early in 2022 for schwannomatosis.
There will also be a Friday night “social” for patients and families to meet others.
We can’t get together in person, so we’re bringing it right to you wherever you are!
Learn more at www.nf-info.org.

NF Power Hour - ABLE Accounts
2022-01-27 19:00 - 20:00 (America/Chicago)
Join us as Rosemary Laudani, Manager of Illinois ABLE, explains the benefits of ABLE (“Achieving a Better Life Experience”) accounts for people with disabilities….even if they aren’t on SSDI.
An ABLE Account is a tax-advantaged savings account that allows individuals with disabilities to save and invest money for many expenses without losing eligibility for certain means-tested public benefits programs, such as Medicaid, Supplemental Nutrition Assistance Program (SNAP), Supplemental Security Income (SSI), or Social Security Disability Insurance (SSDI).
We welcome anyone to attend this webinar.
Register

Webinar: Learn About Camp New Friends
2022-03-22 17:30 - 18:30 (America/Chicago) | Online
Register for the Event

1st Annual E's Hulkster Trivia Night
2022-04-30 19:30 - 20:30 (America/Chicago) | East Annex, 801 E. Switzler, Centralia, MO, 65240, United States
Doors open at 6:30pm
Entry deadline: April 25, 2022
Team (6-8 people): $80. Need a team? $15 and we’ll hook you up!

Cash prize for top team
Prize for most decorated table
Mulligans
Silent Auction
BYOB & Snacks

All proceeds to benefit NF Midwest. Entry fee with name of team and phone # can be emailed or mailed.
Please make out checks to NF Midwest.

Walk4NF Columbia
2022-05-07 10:00 - 13:00 (America/Chicago) | Stephens Lake Park, Columbia, MO, 2001 E Broadway, Columbia, MO, 65201, United States
Walk4NF Columbia Details
Get ready for the 3rd Columbia 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 right 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.
We look forward to seeing you!

Walk4NF Madison
2022-05-21 10:00 - 14:00 (America/Chicago) | Capital Brewery, 7734 Terrace Avenue , Middleton, WI, 53562, United States
Walk4NF Madison Details
Get ready for the 10th IN-PERSON Madison Walk4NF (also known as Great Steps4NF)!
Plus, NF Midwest is celebrating 40 years as a chartered non-profit!
(1) Register and learn much more at www.nfmidwest.org/walk4nfmadison 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 on the right 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!!

Walk4NF Naperville, IL
2022-06-04 10:00 - 13:00 (America/Chicago)
Walk4NF Naperville Details
Get ready for the 20th IN-PERSON Naperville Walk4NF (also known as Great Steps4NF), the largest walk and party in the park for NF in the country!
Plus, NF Midwest is celebrating 40 years as a chartered non-profit!
(1) Register and learn much more at www.nfmidwest.org/walk4nfnapervilleas 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 on the right 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 2022
2022-07-10 - 2022-07-16 | Blue Ridge School, 273 Mayo Drive, St. George, VA, 22935, United States
July 10-July 16, 2022 for all
July 8-July 16, 2022 for teens (optional)
Register and learn more at www.brainycamps.com/camps/neurofibromatosis.html.
NF Midwest provides Brainy Camps/Camp New Friends funds assist with tuition and travel for campers from our region. Application must be made to Brainy Camps/Camp New Friends.

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) | Virtual
VIEW FLYER REGISTER
