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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