Summer 2020 Neurofibromatosis Midwest Newsletter
Check out our Summer 2020 NF Midwest Newsletter!
The highlights of this issue include…
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- Be sure to check out our wall of thanks! We’re sure we missed people, but please know that we appreciate you all!