You Can Help  

 Get Involved


Would you like to be more involved in the NF Community? NF Upper Midwest is looking for volunteers to help with various fundraising efforts, administrative duties, providing IT services, advising on legal matters, and joining our Board of Directors. If you have another skill that you would be able to offer, please let us know. You can contact us at either (651) 204-0067 or send us an email.


Join our advocacy campaign by contacting your congressional leaders now to ensure ongoing funding of NF research. Click HERE to get started.

Hold A Community Event For NF

Be the change! Hold a Community Event for Neurofibromatosis!

A community event is a fundraising or awareness activity by a group or individual outside of the NF Upper Midwest in which we have little or no staff involvement or responsibility. Funds from these events help to continue to support our mission and the NF community.  From hosting a dinner party, pub crawl, trivia night, skate-a-thon, to donating proceeds from product sales, there are countless ways to raise funds and awareness for NF Upper Midwest and there are endless possibilities. We are excited to hear what you have in mind. If you need help just give us a call and we can explore your ideas together. 

Participate In Research

The main place to look for opportunities to participate in research is at ClinicalTrials.gov. Click HERE to get started. This will bring you to the studies relating to neurofibromatosis.

Join the Washington University NF1 registry HERE

You can also check out the Neurofibromatosis Consortium HERE.

Finally, if you would like to be a consumer reviewer for Consumer Directed Medical Research Program (CDMRP's), you can learn more HERE. If you want more information about getting involved with this program, send Amy Klimas an email.


get in touch

1430 Concordia Ave, #40241
        St. Paul, MN 55104
(651) 204-0067
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you can get involved

There are so many ways to help create more awareness, education and support for those affected by neurofibromatosis. You can make a difference!

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CONTACT: 1430 Concordia Avenue, #40241, Saint Paul, MN 55104 | (651) 204-0067   Send us an email