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
Get Involved
“..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
Learn
“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!
News/Blog
“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

Do It Your Way (DIY) Events

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

Do It Your Way-Create a Personal Event

Want to Do It Your Way by raising awareness and funds with a personal 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 Your Way event, we’re here to help however we can.

If you’re interested in hosting a Do It Your Way Fundraising Event, please contact:

The NF Midwest Office

630-945-3562

Setting Up a Do It Your Way (Personal) 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 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

Just wanted to say Friday night and Saturday were very much worth the 301 miles we drove, and the best meeting we have attended anywhere considering our NF2 interests. Of course doctors Marco Giovannani and Bradley Welling were responsible for the in depth knowledge and understandings we acquired. And Matt Hay’s account of his Ironman achievement was an inspiration for all. Our thanks to all on your team who helped with the planning.

- Symposium Comments from Dorothy

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.

Donate

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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.