June 8th is World Brain Tumor Day. American Brain Tumor Association explains a brain tumor as a growth of abnormal cells that form in the brain. These growths can be cancerous or benign. Often the first signs of brain tumors are headaches although many experience a wide variety of have symptoms such as vision loss,…
Read MoreA Heartfelt Thank You to Madison and Indianapolis
Dear Walk4NF Participants, Supporters, and Volunteers, Our first two walks are done! It is with immense gratitude and joy in our hearts as we thank Madison and Indianapolis for their outstanding participation and support during the Walk4NF events held on May 13th and May 20th. Your unwavering dedication and commitment have made these events resounding…
Read More2023 Scholarship Recipients
For many years NF Midwest has provided the opportunity for students from our area diagnosed with NF1, NF2-SWN, or schwannomatosis and pursuing post-high school education the opportunity to earn the NF Midwest Scholarship of $1000. This fantastic opportunity is funded by a charitable trust left to NF Midwest by Frances and Irma Napolilli. Applicants who…
Read MoreSpring 2023 NF Midwest Newsletter
Check out our Spring 2023 NF Midwest Newsletter! The highlights of this issue include… Page 1 Page 2 Page 3 Page 4 Page 5 Page 6 Page 7 Back Page
Read MoreThe Power of Passion: Volunteer Spotlight
Christina and Kristi from Walk4NF Columbia accomplished some amazing things recently. Christina and Kristi have been the committee chairs of Walk4NF Columbia since 2019. These two lovely people are the queens of hustle. Literally everywhere they go, they share their passion and information about NF. In doing that, they have been able to score some…
Read MoreMonthly Giving: Small Gift, Big Impact
A budget friendly way to plan your giving throughout the year. Monthly giving, also known as recurring giving, is a form of charitable giving where you can make regular, ongoing contributions to a nonprofit organization. Instead of making a one-time donation, you can commit to making a monthly gift of a specified amount, typically through…
Read MoreDo it Your Way Fundraising: Doesn’t Have to be Difficult or Time Consuming.
Fundraising is an essential part of keeping organizations operating to continue their mission of research, support, and advocacy. Events such as galas, walks and concerts can help to raise funds, however big events are not the only way to make a big impact. Do-it-Your Way fundraisers, no matter how big or small, can make a…
Read MoreSpotlight on Hosting a DIY Event: E’s Hulksters
The captain of E’s Hulksters, Dawni Henry, shares with NF Midwest what hosting a DIY (Do It Your Way) event was like! How did you decide on a trivia night? DH: Trivia Nights have been a fun outing with our friends & family in the past, and we thought that we could put on a pretty…
Read MoreShow Your Stripes: Awareness for Rare Disease Day
Between 25-30 million Americans are living with a rare disease according to the National Organization for Rare Disease (NORD). A disease is considered to be rare when it affects less than 1 in 2,000 people. As of today, there are over 7000 rare diseases. People living with a rare disease often face isolation, lack of support and…
Read MoreMiranda – A Face of NF
I was diagnosed at age 2. I have cafe au laits, bilateral optic gliomas, a few cutaneous neurofibromas, innumerable internal neurofibromas, and a large plexiform neurofibroma that sits behind my stomach that I have named PITS (Pain In The Stomach). PITS really lives up to his name. Starting in 2018 he decided to start causing…
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