Celebrating 35 Years

Neurofibromatosis Midwest Spring 2019 Newsletter

Spring 2019 Neurofibromatosis Midwest Newsletter

Check out our Spring 2019 NF Midwest Newsletter!

The highlights of this issue include…

Page 1

  • Information on the new Young Adult Leadership program
  • We  have a new  Care Impact Grant that clinics can apply for to improve care
  • A research grant was given the University of Chicago for neurofibromatosis clinical trials

Page 2

  • Announcement of our 2018 scholarship recipients
  • Two neurologists are now seeing NF patients at the University of Illinois – one for children, one for adults
  • SamJam4NF 2019 is September 21- free tickets to people with NF
  • We’ve received a generous grant from Discount Tire’s Driven to Care Program again this year!

Page 3

  • Dates and info for our 2019 Great Steps Walks 4NF
  • Recognition gifts

Page 4

  • Meet our new Board Chair, Denise Dulceak
  • Meet our new Outreach and Care Coordinator, Andrea Miller
  • Information on Camp New Friends which is running Aug 3rd through Aug 9th
  • Information on the new Breakthrough Therapy Designation (BTD) of Selumetinib for plexiform tumors
  • We have special new pens available to monthly donors
  • Leave a legacy to NF Midwest or transfer stocks/IRAs/401Cs
  • Remembering those who have passed and the memorials we’ve received

Page 5

  • NF Midwest’s annual symposium and iNFo Fair is set for November 9th
  • Learn a little about the formation of our NF Midwest Dream Team
  • NF Midwest and the Midwest community help secure another $15 million in federal funding
  • Different ways to stay iNFormed

Page 6

  • Do It Yourself (DIY) Fundraising 4NF – Raise funds your way!
  • Our NF2 Action Committee is looking for members
  • You could win a 2-year lease on a Lexus by pledging to Birdies for Charity
  • Various event announcements including support group meetings; Fort Wayne TinCaps Family Night; Kentucky Support Group; Central Missouri meetings

Page 7

  • Check out our mini yearly review in an infographic

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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