Celebrating 41 Years

Summer 2021 NF Midwest Newsletter

Summer 2021 NF Midwest Newsletter

Check out our Summer 2021 NF Midwest Newsletter!

The highlights of this issue include…

Page 1

  • It’s been a tough year but we are hanging in there. However, as a small non-profit we are struggling and need your support.
  • NF Midwest has provided various grants to hospitals to fund research and clinics.
  • We have collaborated to fund gene therapy research in NF2.
  • Make sure you are receiving our emails.

Page 2

  • In lieu of in person walks, in 2020 we held a Walk That Wasn’t and encouraged people to fundraise and raise awareness in their own ways.
  • There are many prizes for fundraising for our events, including choosing next years shirt colors for the top team!
  • Teams raise money in various ways including online drawings, sponsorships, or matching gifts. Find a way that works for you.

Page 3

  • We will be hosting a Celebrathon on October 17th to celebrate the NF community and highlight NF Midwest’s yearly events.
  • You can still participate in fundraising and awareness for the Walk Your Way event and get prizes through September 25th.
  • Read about our top fundraising teams and individuals for the Walk That Wasn’t 2021.

Page 4

  • The SamJam Music and Brewfest will take place on August 28th. Come and listen to some music and enjoy some food and beer.
  • Try a Do-It-Yourself (DIY) Event to fundraise for your team.

Page 5

  • NF Midwest now holds Power Hours and Parent Group meetings via Zoom for education and support.
  • We have updated the search function on our website and added resources.
  • A new document and webinar on “Transitioning to Adult Care” has been published by the NF Collective.
  • NF Midwest needs board and committee members. Consider joining!
  • On November 13th there will be an online iNFo Fair in place of our annual symposium.

Page 6

  • There has been an update on the diagnostic criteria for NF Type 1. Cafe au lait spots are still a big indicator, of course.
  • A few research studies are looking for participants. Check them out!
  • The House of Representatives has approved $20 million in research funds for NF thanks to lobbying efforts.
  • Consider alternate donation methods such as monthly giving, stocks, matching gifts, etc.

Page 7

  • This year NF Midwest had 4 scholarship recipients. The next application process starts in January.
  • In May, several individuals and families shared their stories. Go to our YouTube to watch.
  • The Young Adult Leadership program returns in 2022. Young adults are offered the opportunity to develop leaderships skills and personal strengths.
  • New merchandise is available in the store.

Back Page

  • Be sure to check out our wall of thanks! We’re sure we missed people, but please know that we appreciate you all!



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