Check out our Spring 2019 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 SPRING 2019 NEWSLETTER
Read MoreOctober 2018 Slides and Transcript – Resiliency
At our October 20th, 2018 symposium, we had the pleasure of learning strategies and skills to improve resiliency and overall well-being from Eric Riklin, a man who knows the subject well both professionally and personally. Eric, who has a craniofacial condition and has had 25 surgeries from birth through the age of 22, is a…
Read MoreOctober 2018 Symposium Transcript – Neuromuscular Retraining for Facial Paralysis
At the October 2018 NF Midwest Symposium and iNFo Fair, Jackie Diels, OT, a leading authority on facial neuromuscular retraining (NMR), presented to our neurofibromatosis type 2 community. Ms. Diels discussed this non-surgical therapeutic approach to the treatment of facial paralysis, paresis, and synkinesis. This presentation provided an understanding of how the facial nerves and…
Read MoreJanna – A Face of NF
Our daughter Janna was diagnosed with neurofibromatosis type 1 when she was five months old. Doctors tell us that it caused a heart defect, which she had open heart surgery for when she was thirteen months old. Janna has many other medical issues from NF1 including hearing issues, an optic glioma (tumor on the nerve…
Read MoreIfy – A Face of NF
My husband and I had never heard of NF1 until May 2015 when our daughter, Ifunanya or Ify (pronounced “eff-ee”), had her 1 year old check-up. Her pediatrician asked us if we had noticed the freckling and cafe-au-lait spots on our daughter from her toes to her neck. I responded with a slow yes knowing…
Read More10 Ways You Can Help Your Favorite Nonprofits!
Which nonprofits have you wanted to help this year? You probably have a list of your favorites! Supporting those meaningful causes may be easier than you think. As Executive Director of Neurofibromatosis (NF) Midwest, I’ve learned that people are an organization’s greatest asset and have the greatest power to advance a cause like neurofibromatosis. You may…
Read MoreNF Midwest Supports Area Clinical Trials
If you’ve been paying any attention to NF research in the last several years you’ll have noticed that in clinical trials some drugs are showing a lot of promise in the treatment of NF1 plexiform tumors and NF2 tumors. For over 36 years NF Midwest has been funding research for the many complications of neurofibromatosis type 1,…
Read MoreJay – A Face of NF
Jay, 10 Mos. Our sweet baby boy Jay was diagnosed with NF Type 1 in May of 2018 at six months old. We spotted his first café au lait spot when he was one day old in the hospital. The nurse said it was just a birthmark. By two months old he had more. After…
Read MoreSam – A Face of NF
Sam, 33 I was diagnosed with neurofibromatosis type 1 (NF1) while being treated for scoliosis when I was 4 years old. I had to have a spinal fusion with a long recovery. Later, beginning at age 10, I ran into several other NF-related conditions: two brain tumors, shunt revisions, knee surgery, bone grafting to repair…
Read More2018 Scholarship Recipients
Neurofibromatosis Midwest is excited to award $1,000 academic scholarships to six adults affected by neurofibromatosis or schwannomatosis. This is the fourth year for NF Midwest’s scholarship program which was piloted with funds from a charitable trust left to NF Midwest by Frances and Irma Napolilli. The program awards scholarships to students from our service area who…
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