Celebrating 35 Years

Neurofibromatosis Midwest Summer 2020 Newsletter

Summer 2020 Neurofibromatosis Midwest Newsletter

Check out our Summer 2020 NF Midwest Newsletter!


The highlights of this issue include…

Page 1

  • Changes at NF Midwest due to current events and how to continue to help.
  • NF Midwest Funds NF2 Gene Therapy Research.
  • Other (4) NF Midwest grants-Massachusetts General, University of Wisconsin, NF Clinic at University of Illinois/Chicago, and Brainy Camps.

Page 2

  • Announcement of our 2019 scholarship recipients.
  • Information on 2020’s Young Adult Leadership program and how to apply for 2021.
  • Camp New Friends information. This year camp went virtual!
  • Elections for new Board Members take place in September.

Page 3

  • New guidelines [for doctors] for adults and children with NF1.
  • FAQ on the approved plexiform drug Koselugo.
  • NF has been approved for $20 million through the Congressionally Directed Medical Research Committee!
  • New Be iNFormed articles written by professionals.

Page 4

  • Information on our physical walk replacement, “The Walk That Wasn’t”, a virtual event.
  • How to raise funds and awareness for the new event.
  • Recognition prizes you can earn.
  • Ways to participate in the event.

Page 5

  • Recap of 2019’s Great Step Walks.
  • Thank you to a top volunteer, Tim.
  • Highlighting some of our biggest fundraisers of the year so far.

Page 6

  • Participate in NF Research
  • Launch of a new website to connect patients with doctors.
  • Introduction of a new board member-Dena Hasselberg.
  • Introduction of our new Event Coordinator- Maggie Wright.
  • Introduction of our new Care and Outreach Director-Paul LeBlanc.
  • Remembering those who have passed and the memorials we’ve received.
  • Become a Monthly Donor and get two superhero pens.

Page 7

  • Sharing the success of TopGolf 2020.
  • Become a Dream Maker and join the NF Midwest Dream Team.
  • Join a local support group.
  • Consider recognizing NF Midwest in your end of life plans or give a gift in the form of a stock or IRA.
  • There will be no Symposium and iNFo Fair this year.
  • Join the NF2 Action Committee.
  • Thank you to Hoosier Crane for raising money for NF Midwest at their holiday party this past year.

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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