Summer 2021 NF Midwest Newsletter
Check out our Summer 2021 NF Midwest Newsletter!
The highlights of this issue include…
Page 1
- It’s been a tough year but we are hanging in there. However, as a small non-profit we are struggling and need your support.
- NF Midwest has provided various grants to hospitals to fund research and clinics.
- We have collaborated to fund gene therapy research in NF2.
- Make sure you are receiving our emails.
Page 2
- In lieu of in person walks, in 2020 we held a Walk That Wasn’t and encouraged people to fundraise and raise awareness in their own ways.
- There are many prizes for fundraising for our events, including choosing next years shirt colors for the top team!
- Teams raise money in various ways including online drawings, sponsorships, or matching gifts. Find a way that works for you.
Page 3
- We will be hosting a Celebrathon on October 17th to celebrate the NF community and highlight NF Midwest’s yearly events.
- You can still participate in fundraising and awareness for the Walk Your Way event and get prizes through September 25th.
- Read about our top fundraising teams and individuals for the Walk That Wasn’t 2021.
Page 4
- The SamJam Music and Brewfest will take place on August 28th. Come and listen to some music and enjoy some food and beer.
- Try a Do-It-Yourself (DIY) Event to fundraise for your team.
Page 5
- NF Midwest now holds Power Hours and Parent Group meetings via Zoom for education and support.
- We have updated the search function on our website and added resources.
- A new document and webinar on “Transitioning to Adult Care” has been published by the NF Collective.
- NF Midwest needs board and committee members. Consider joining!
- On November 13th there will be an online iNFo Fair in place of our annual symposium.
Page 6
- There has been an update on the diagnostic criteria for NF Type 1. Cafe au lait spots are still a big indicator, of course.
- A few research studies are looking for participants. Check them out!
- The House of Representatives has approved $20 million in research funds for NF thanks to lobbying efforts.
- Consider alternate donation methods such as monthly giving, stocks, matching gifts, etc.
Page 7
- This year NF Midwest had 4 scholarship recipients. The next application process starts in January.
- In May, several individuals and families shared their stories. Go to our YouTube to watch.
- The Young Adult Leadership program returns in 2022. Young adults are offered the opportunity to develop leaderships skills and personal strengths.
- New merchandise is available in the store.
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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