Neurofibromatosis Midwest

Clinics, Awareness, Research, Education & Support

What We Do
“Mom found NF Midwest, she calls them our life ring and for good reason, they saved us in more ways than they or anyone else could imagine. We were no longer alone. They sent us information, talked to us gave us a breath when everyone else seemed to have taken it away. Trust me when I say my NF is much easier with them in my corner. ”
-Myshell
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“..we reminded ourselves to not get overwhelmed by the info and just to take it all in stride as much as we can. I think when it’s all new to you, it all sounds so scary. Which is why it was so nice to meet other families with happy kids and adults with NF. ”
-Sue
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“I received both of your packets in the mail yesterday and I wanted to say THANK YOU! The NF packet provided me with so much information I cannot thank you enough. When we got his diagnosis in November we had never even heard of NF so this has all been a bit of a whirlwind for us. Thank you for providing me with the tools to pass along to his teacher and my family! ”
-Jessica
Events
View our upcoming events and join us in making NF Midwest great!
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“Thanks for giving me information to guide me in the right direction. I can do this because you have given me the tools to get started. Other websites send me in circles leaving me with more questions than I began with. So once again THANK YOU FOR CARING.” – S.E. Age 29

#DoIt4NF (DIY) Events

Do something 4NF! Do something you know…Something you love! Don’t worry…we’re here to help!

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Create Your Own #DoIt4NF (DIY) Event

Raise awareness and funds by creating your own #DoIt4NF (DIY) event. This is a great way to give more than your individual donation and to raise funds to support Clinics, Awareness, Research, Education and Support. Include your friends to help improve the lives of children and adults with neurofibromatosis in meaningful ways. While it is a Do-It-Yourself (DIY) event, we’re here to help however we can.

Setting Up a #DoIt4NF (DIY) Event

Whether you have organized an event before or this is your first time, we want your fundraiser to be a great success and we’re here to help you. Combined with NF Midwest’s expertise in planning, tax receipting, policies and recognition, you can easily hold your own fundraising event that is meaningful for everyone. We know organizing and planning a fundraising event can be a huge task, which is why our team of experienced event staff are happy to support you and provide the tools you need.

What is a #DoIt4NF (DIY) Fundraiser?

A #DoIt4NF fundraiser is when a business, organization, community group, school or individual hosts an event or program to benefit NF Midwest. It is planned and executed independently of NF Midwest.

Why should I have a #DoIt4NF (DIY) Fundraiser for NF Midwest?

NF Midwest is funded almost entirely by donations. In order to improve the lives of adults and children who have neurofibromatosis in our region we need your help. It is as simple as that…we need YOUR help. You CAN make a difference.

I want to organize a fundraiser for NF Midwest but I’m not sure what to do.

We have lots of ideas on ways that you can help raise funds and awareness for your NF Midwest. You can find some on our website or simply contact us. Here are just a few ideas…

Hold some sort of party with a fun theme or event – think Trivia Nite, Game Nite, Wine Tasting; host a benefit concert; hold a tournament (golf, basketball, mini-golf); have a bake sale or car wash. If you’re planning an event for friends where everyone has to chip in – for instance a dinner, a picnic or a golf outing – tell everyone that the “overflow” will be donated to NF Midwest.

The key is to do something that you feel would be fun and rewarding and that works for you….#DoIt4NF!

Whatever you do designate the NF Midwest as the beneficiary for your event.

I want to host a fundraiser, what should I do next?

Contact NF Midwest or check out our guidelines and submit the Fundraiser Proposal Form. Once the agreement is signed and returned to the us, you are ready to start promoting your event and we’re ready to help you!

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What NF Midwest Can Do

Offer advice and information on event planning logistics.
Provide material and press release assistance.
Provide a letter of support to validate the event and its organizers.
Provide letters for volunteer hours.
Provide tax receipts for eligible donations.
Assist you with volunteer, speaker and/or sponsor recruitment.
Promote your event via our local websites and social media accounts.

What NF Midwest Can't Do

Provide any sponsorship, funding or reimbursement for event expenses (unless approved as a special circumstance).
Solicit or provide contact information for donors or staff.
Endorse applications for and/or obtain any necessary licenses or permits (i.e. gaming and/or liquor)
Approach potential sponsors (corporate or individual) on your behalf, or provide you with contacts for sponsorship.
Assume any legal or financial liability associated with the #DoIT4NF (DIY) Event.
Provide a tax receipt to the event organizer or one individual for the total funds raised by the event.

Event Ideas and Fundraising Tips

Find ideas for tips and ideas for events to raise funds and awareness. These funds can be put towards your team if you participate in a Great Steps 4NF event or we can simply track them by your name.

#DoIt4NF (DIY) Guidelines

Read our #DoIt4NF (DIY) Guidelines and learn more about holding your own event. These are just guidelines, ff you see a problem or have a concern, we can work it out!

Create Your Own Fundraising Page

Learn how to set-up your own fundraising page through our fundraising portal for your event or your Great Steps 4NF team so individuals can support you with a direct donation. You can also share your event details there, such as contact information, links to your event page (if applicable), photo and videos.

People Are Talking

NF Midwest has been a true blessing. My husband and my son have Neurofibromatosis . We didn't know who to talk to for doctors and support. My husband has NF 1, he is a Veteran . And goes to VA hospital. Our son has NF 1. He has had to have surgeries to remove fibros . We have run into many obstacles. As NF family we need to talk to people who have gone threw what we were, emotionally. Physical and financially . Without support of NF Midwest I don't know where we be now.

- writer #2

Find NF Care

Get the best care! Find an experienced NF doctor/clinic in the NF Midwest region.

Be iNFormed

Knowledge is power! Learn and understand as much as possible about neurofibromatosis.

Community Support

Don’t fight alone! Meet others in the NF community to learn and share experiences.

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The resources on this site should not be used as a substitute for professional medical care or advice on Neurofibromatosis. Users seeking information about a personal genetic disease, syndrome, or condition should consult with a qualified healthcare professional.