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
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

Parent Group Meeting
2021-06-10 20:00 - 21:00 | 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 Open Chat
2021-05-18 18:30 - 19:30 | 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
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 | 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 | 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
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 | 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
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
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
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
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.
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