Celebrating 35 Years

Neurofibromatosis Midwest Summer 2020 Newsletter

Summer 2020 Neurofibromatosis Midwest Newsletter

Check out our Summer 2020 NF Midwest Newsletter!

SUMMER 2020 NEWSLETTER PDF

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!

SUMMER 2020 NEWSLETTER

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