Neurofibromatosis Midwest

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

Parent Group Meeting
2022-03-10 20:00 - 21:00, 2021-06-10 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.

NF Power Hour - ABLE Accounts
2022-01-27 19:00 - 20:00 (America/Chicago) | Illinois
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

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.

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!

Hand to Heart Art 4NF
2021-07-07 - 2021-09-02 | Illinois
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.

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

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.

Walk4NF YOUR WAY Madison, WI
2021-05-15 10:00 - 13:00 (America/Chicago) | Illinois
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.

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.

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

Walk4NF YOUR WAY Columbia, MO
2021-05-01 10:00 - 13:00 (America/Chicago) | Illinois
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.

Parent Group Meeting with Speech Discussion
2021-04-08 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.

We will have a discussion about speech at the beginning of the April 8th meeting. Heather Thompson, PhD CCC-SLP speech pathologist and NF researcher from California State University will be joining us.

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.

NF Power Hour-What and When to Talk To Your Kids about NF
2021-02-16 19:30 - 21:00 (America/Chicago) | Illinois
Edna Romero, PhD., Assistant Professor of Psychiatry and Behavioral Sciences (Child and Adolescent Psychiatry) at Lurie Children’s Hospital of Chicago will be our guest for this NF Power Hour. She will guide parents on how and when is the best time to discuss it with your child or their siblings.

INFormation Session/NF Power Hour
2021-02-03 19:00 - 20:30 (America/Chicago) | Illinois
NF Midwest, NF Northeast, and NF Texas have teamed up to bring the NF community two important virtual iNFformation sessions or NF Power Hours.
This one will cover Medicare, Medicaid, Insurance, and other assistance.
Please register for the virtual event at www.bitly.com/nfinsurance

iNFormation Session or NF Power Hour
2021-01-26 19:00 - 20:30 (America/Chicago) | Illinois
NF Midwest, NF Northeast, and NF Texas have teamed up to bring the NF community two improtant virtual iNFormation sessions or NF Power Hours.
The first one will cover SSI, SSDI (disability), ABLE accounts and special needs trusts and wills.

Please register for the zoom at www.bitly.com/nf-ssdi

The Walk That Wasn't
2020-10-17 10:00 - 12:00 (America/Chicago) | Illinois
Due to COVID our physical walks are cancelled but we’re still following our walk motto that “No One Fights Alone When We All Party Together!” and we need the NF Midwest community to come together more now than ever before!
Join us in this special journey by signing up now at www.nfmidwest.org/walkthatwasnt.
Register Now Sponsorship opportunities
How To Participate in TWTW
Phase One—Individuals Raise FUNds and Awareness!

Sign up NOW as an individual or as a TEAM of individuals and start raising funds and awareness through whatever fun ways you can think of or by simply sharing your personal fundraising page.
Compete for prizes and earn recognition gifts.
Have fun, be crazy, get people to join in and raise awareness.
Be sure to invite individuals to fundraise under your team so that you have the honor of raising the most and choosing next year’s t-shirt colors.
Registered fundraisers will get a Walk that Wasn’t t-shirt if they raise $100 or pay the $25 fee. (Note: Registration fees will NOT be added to fundraising totals.) T-shirts will be given to team Captains (when applicable).
Create a recording (this is optional) of your team, about NF, about a loved one with NF , maybe an interesting talent, or anything you can think of and send it to NF Midwest.

Phase Two—Come to the TWTW CELEBRATHON!

Join us (and invite everyone you know) to our October 17th Walk that Wasn’t Celebrathon. This will replace our actual walks.
We’ll celebrate our community and our fundraisers.
There will be raffles and more.
Show the best submitted videos (don’t worry if your video isn’t show we will share it in other ways.)

Camp New Friends 2020 Virtual Camp
2020-07-20 - 2020-07-24 | Blue Ridge School, 273 Mayo Drive, St. George, VA, 22935, United States
Do you have a child interested in attending Camp New Friends, a camp for kids with neurofibromatosis? If so, NF Midwest provides camperships and travel assistance for children from our region. For the past 15 years kids from our area have benefited greatly from this camp experience. Applications for camp and for assistance are taken by Camp New Friends Brainy Camps and reimbursed by NF Midwest.
This year camp will be virtual and is an excellent opportunity for your child with NF to meet others. The cost is only $200 and NF Midwest will pay $100 of that for anyone from our states (Illinois, Indiana, Iowa, Kentucky, Missouri, and Wisconsin) We will also be sending a $25 Amazon gift card to any of our campers who participate in approximately 75% of the activities.
Please contact us if you’d like more information or go to brainycamps.com.
READ MORE

2019 Symposium and iNFo Fair
2019-11-09 08:00 - 16:30 (America/Chicago) | Northern Illinois University Building, 5555 Trillium Boulevard, Hoffman Estates, IL, 60192, United States
be iNFormed!
Join us for an exciting day in which you will learn from the experts and share experiences about neurofibromatosis, including the latest progress in NF research, current treatment options, and practical advice for living with NF. We have scheduled presenters, but we also provide tables of iNFormation and build in time for people to meet and talk with others including our experts and presenters.
8:00 – 9:00 am Check-in, Continental Breakfast, and Socializing
CART (Captioning will be provided for MOST sessions. Email us for more info at info@nfmidwest.org)
We will also be holding a “gathering” on Friday night. We haven’t firmed up what that will be, but it will be a time to get together with others who arrived early or live in the area and want to meet.
Financial assistance to attend NF Midwest’s Symposium is available. Please email andrea@nfmidwest.org. Include a description of your financial need and how you hope to benefit from attending.
REGISTER HERE Brochure

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Scheduled Presentations

Topics are NOT IN ORDER of the actual schedule and may be subject to change. There will also be opportunities that aren’t listed here for meeting and talking with others.

NEW NF1, NF2 AND SCHWANNOMATOSIS DIAGNOSTIC CRITERIA – Robert Listernick, MD, Lurie Children’s Hospital and NF Clinic, Chicago, IL

ENCOURAGING SOCIAL CONNECTIONS AND ADAPTIVE BEHAVIORS. HOW PARENTS CAN HELP! Sandra Cushner-Weinstein LICSW, director of Brainy Camps and Camp New Friends, and a social worker from the Children’s National Medical Center in Washington, DC
GENE THERAPY/GENE EDITING – Robert Kesterson, PhD, University of Alabama, Department of Genetics
NF1 TOPIC: CUTANEOUS NEUROFIBROMAS

Genetics and Biology of Cutaneous Neurofibromas – Matt Steensma, MD, Spectrum Health, Francis S Collins Scholar
Natural History of and Drug Treatments of Cutaneous Neurofibromas– Ashley Cannon, PhD, MS, CGC, University of Alabama
Surgical Management of Cutaneous Neurofibroma: Current Therapy and Future Directions – Lu Le, MD PhD, University of Texas Southwestern Medical Center
Research Update: Photodynamic Therapy on Cutaneous Neurofibromas—Marsha Malloy, RN, BSN, MBA, Medical College of Wisconsin

REGIONAL CLINIC INFO AND TRIALS UPDATES
NF1 TOPIC: OPTIC GLIOMAS/RESEARCH AND TREATMENT UPDATE – Robert Listernick, MD, Lurie Children’s Hospital and NF Clinic, Chicago, IL
NF 2 TOPIC: HEARING REHABILITATION IN NF2 – Auditory Brainstem and Cochlear Implantation – Kevin Peng, MD, Otologist/Neurotologist, House Clinic. Los Angeles, CA
NF 2 TOPIC: DISCOVERIES FROM SYNODOS FOR NF2 and Identification of Natural Compounds to Treat NF1 and NF2 Tumors – Long-Sheng Chang, PhD, Professor, Abigail Wexner Research Institute at Nationwide Children’s Hospital and The Ohio State University College of Medicine
NF 2 TOPIC: NF2 BIOSOLUTIONS – Accelerating Gene Therapy Research for Neurofibromatosis Type 2 – John Manth, Board Member

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iNFormation Tables

(We are still working tables, but look for there to be a lot of information. We will have a table time where all speakers will be available for more discussion)
During a special “table time” and other breaks you will be able to visit the areas that interest you and talk to an expert or advocate. The following are the tables we hope to have available. We will be adding more.

Participating in Research
Pain
Learning Disabilities and School Issues
NF Clinics
Making a Difference—Raising Funds and Awareness

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Kids’ Groups

Children age 5 to 17 are welcome to come and participate in our kids’ groups. They’ll enjoy a day of fun, friendship, and food! Cost is $10 for children ages 13 to 17. Children ages 5 to 12 are free.

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Registration

REGISTER HERE
Registration fee includes continental breakfast, buffet lunch and afternoon snack…and of course invaluable information and the chance to meet others. If you have financial difficulties please contact us to see if we can waive your fee.
If you’d like to avoid the extra ticketing fee for buying your ticket online you may call the office to register at 630.945.3562.
We are unable to refund any tickets purchased.
This is an event meant for those affected by neurofibromatosis and their families. If you wish to attend this symposium for other reasons but don’t have a connection to NF, please contact us via email at info@nfmidwest.org or by calling 630-945-3562.

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Financial Assistance or Other Assistance

If you’d like to attend but need financial assistance or additional help getting to the event, please call 630-945-3562 or email andrea@nfmidwest.org.

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Hotel Information

A block of rooms is available at the Chicago Marriott Northwest/Hoffman Estates for $89 a night. A shuttle can take you to and from the venue if needed. You can make a reservation here or call (847) 645-9500 and ask for the NF Midwest group rate.

Golf Charity Open
2019-09-09 11:00 - 17:00 (America/Chicago) | Ravinia Green Country Club
We are excited to have our inaugural golf fundraising event hosted by Ravinia Green Country Club on Monday, September 9, 2019 in support of NF Midwest. Come out for a day of golf & food and join us for fun, prizes and a great day! Funds will be going to University of Chicago Medical Center, to help advance their NF clinical trials. Please consider joining us for golf in support of this cause as funding is needed. If you are unable to golf we do have excellent sponsorship & silent auction opportunities, as well as a dinner only option.
Schedule:
11:00 – Full access to Driving Range & Locker Room
12:30 – Golf begins with shotgun start
5:00ish – Food, prizes, cash bar
Contact Mike with questions– email admin@golfcharityopen.org

Kentucky NF Support at the Thomas Family Farm July 2019
2019-07-13 12:00 - 16:00 (America/Kentucky/Louisville) | The Thomas Family Farm, 2515 New Glendale Rd, Elizabethtown, KY, 42701, United States
Please join the Kentucky NF Support Group for an afternoon of fun, food, and friendship at the Thomas family farm on Saturday, July 13, 2019 from 12-4pm.
The Thomas family will provide hamburgers, hot dogs, condiments, tea, and lemonade. Everyone is asked to bring a chair and a dish for everyone to share.
The pool will be open!! Be sure to bring your swimsuits and towels! In addition, there will be yard games for kids and adults ,horse back riding (with assistance), & four wheeler and dune buggy rides! Don’t forget the best of all…meeting New Friends!
So come on out if you or a loved one have NF1, NF2, or schwannomatosis! You are not alone in this fight.
Please RSVP to Camillia at camnkyler@gmail.com or call (270)735-6033. This will help with the food count.
For more info about the Kentucky NF Support Group, please email kentucky@nfmidwest.org.

Smiles for Sarah White Sox Day!
2019-06-30 13:00 - 17:00 (America/Chicago) | Guranteed Rate Field, 333 West 35th Street, Chicago, IL, United States
Join the Panozzo Family for a Day at the Ball field to benefit the Ann and Robert H Lurie Children’s Hospital and NF Midwest on Sunday, June 30th from 1-5! You can print the flyer and mail it in or go to the website listed on the flyer to sign up! Don’t miss it!
Flyer

GS4NF in Naperville, IL
2019-06-01 08:30 - 12:30 (America/Chicago) | Naperville Riverwalk, 912 Honorary Sindt Memorial Ct, Naperville, IL, 60540, United States
﻿About this Event
Get ready for the 19th Annual Naperville Great Steps Neurofibromatosis Walk, the largest walk and party in the park for NF in the country!

Register below as soon as possible so we know how many t-shirts, volunteers and food to have. Just 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 (just have team name before registering).

Next 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!

Keep in mind walk-up registration on the day of the walk is $25 per person and t-shirts are guaranteed for participants who pre-register at least 2 weeks before the event.

We look forward to seeing you!

Naperville GS Walk4NF Breakfast with New Friends
2019-06-01 08:00 - 08:30 (America/Chicago) | Naperville Riverwalk, Naperville, IL, 60540, United States
Ever feel like you don’t get the chance to meet other NF friends and families at Great Steps? Let’s change that!
We are bringing back “Breakfast with New Friends” at the Naperville GS Walk4NF this year. You can enjoy a donut, coffee, and the chance to meet and chat with fellow NF individuals and families.
Here’s the scoop, we realize it’s early in the morning but we can all wake up together! Let us know if you’re planning on coming and how many donut eaters you’re bringing. This is meant for people with NF and schwannomatosis, and parents and close loved ones of people with NF. Again it’s a chance to meet!
7:00-8:00 am – Set up your team tent/area if you want
8:00-8:30 am – Breakfast with New Friends (donuts, coffee, & OJ) under the big Tent filled with picnic tables
8:30-10:00 am –Great Steps Registration/Captain check-in
To RSVP email Andrea Miller at andrea@nfmidwest.org or RSVP to the Facebook event on our page.

GS4NF in Madison, WI
2019-05-18 08:30 - 12:30 (America/Chicago) | Capital Brewery, 7734 Terrace Avenue , Middleton, WI, 53562, United States
About this Event
Get ready for the Madison Great Steps Neurofibromatosis Walk starting in the garden at Capital Brewery in Middleton, Wisconsin.
Register below and get started as early as possible. Just 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 (just have team name before registering).
Next 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!
Keep in mind walk-up registration on the day of the walk is $25 per person and t-shirts are guaranteed for participants who pre-register at least 2 weeks before the event.
We look forward to seeing you!
THANK YOU TO OUR WONDERFUL 2018 SPONSORS!
Silver Level

Bronze Level

Friend Level
Dr. Kelleen McClain

Fort Wayne, IN - NF Family Fun Night at the Ballpark
2019-05-17 19:05 (America/Indiana/Indianapolis) | Parkview Field, 1301 Ewing St, Fort Wayne, IN, 46802, United States
May is National Neurofibromatosis (NF) Awareness Month (and in particular, May 17th is World NF Awareness Day), so the Fort Wayne NF community of family and friends invite you out to the ballpark for an evening of family fun! The May 17th game held at Parkview Field will feauture the Fort Wayne TinCaps versus the Lansing Lugnuts. Game starts at 7:05p.m. and the promotional theme is Superheros Night. The evening will end with the very popular post-game fireworks display.
The more people we have, the more awareness and funds will be raised. So spread the word to help this evening in becoming a successful fundraising event.
Cost for this fun-filled evening is $15.00 per person and includes a game ticket, game favors/fun items and raffle tickets to win prizes. Deadline to purchase tickets is April 30, 2019.
For more information email fortwayne@nfmidwest.org.
FLYER WITH MORE INFORMATION

Great Steps Walk 4NF Missouri
2019-05-04 10:00 - 13:30 (America/Chicago) | Peace Park, Columbia, MO, 401 S 9th St, Columbia, MO, 65201, United States
About this Event
Get ready for the First Annual Great Steps 4NF Walk in Columbia, Missouri!
This community-based event is organized by local families who are committed to helping other NF families by raising awareness and funds for the neurofibromatosis cause.
Register below as soon as possible so we know how many t-shirts, volunteers and food to have. Just 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 (just have team name before registering).
Next 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!
Keep in mind walk-up registration on the day of the walk is $25 per person and t-shirts are guaranteed for participants who pre-register at least 2 weeks before the event.
We look forward to seeing you!

Kentucky Support Group Meeting March 16th
2019-03-16 10:00 - 12:00 (America/Kentucky/Louisville) | Kentucky Clinic – University of Kentucky, 740 S. Limestone, 4th floor, Wing D, Conference Room J-467, Lexington, KY, 40536, United States
The Kentucky NF Midwest group will be holding their monthly NF Support group meeting Saturday, March 16th, from 10 am until Noon in the Kentucky Clinic on the University of Kentucky Campus at 740 S. Limestone, 4th floor, Wing D, Conference Room J-467.
Parking is free and available in the Kentucky Clinic parking garage on the 4th floor. Please use the doors to the right to enter.
If you plan to attend, please let Kathleen know at kentucky@nfmidwest.org.
Please share this information with anyone you know who might be interested in discussing and learning more about neurofibromatosis.
If you need better directions or have any questions, email Kathleen at Kentucky@NFMidwest.org.
We hope you can make it!

Family Tee Up 4NF at Topgolf
2018-09-30 13:00 - 16:00 (America/Chicago) | Topgolf Naperville, 3211 Odyssey Ct, Naperville, IL, 60563, United States
Please join us for an afternoon of family, new friends, food, fun, raffles, competition and a great cause!
Whether you’re an experienced golfer or new to the game, all skill levels and ages are welcome.
Bring your family, friends, neighbors or coworkers. You can even create teams of 6. 6 golfers allowed per bay but you can share a turn or just hang out . Individual registration is available if you have more or less than 6 participants.
All Proceeds benefit Camp New Friends, a summer camp program sponsored by NF Midwest just for kids with NF. We provide funding for campership and travel assistance to families in need. Camp allows NF kids to meet others just like themselves, do fun activities just like other kids but also receive counseling and coping skills all in a safe medically supervised setting!
Interested in becoming sponsor? The following sponsor opportunities are listed below. Please contact Christine at Christine@nfmidwest.org for more information.
Ticket Info
Registration includes demonstration, Lifetime Membership to TopGolf for every participant, 2.5 hours of hitting fun, golf clubs/balls, delicious buffet, dessert, bottomless soda, ice tea and water and cash bar available
$35 per adult participant (13 and up)
$30 per child (12 and under)
$200 per team of 6
REGISTER
Sponsorship Opportunities
Event Sponsor $5000
Buffet Sponsor $2500
Beverage Sponsor $1000
Bay Sponsor $500
Bay Sponsor (not attending) $250
For More Sponsorship info see form link in the column to the right!
