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The new issue of NF News, the official newsletter of the Children's Tumor Foundation, is now available! In this issue you will find:
- Global NF Conference | Highlights of 2018 event held in Paris
- Launch of CTF Europe | Formation of the new European-based medical research NGO
- Fall Fundraising Festivities | Ruby Anniversary Gala, Detroit BeNeFit, Big Shots and Little Stars, Dancing with Our Stars, and New England Gala
- Year-End Donation Match | Your gift will be matched dollar-for-dollar
- And so much more!
Academic underachievement is a common concern voiced by parents of children with NF1. Up to 75% of children diagnosed have poor academic achievement in various subjects, which is much higher than the percentage of children who have learning disabilities in the general population. Reading deficits are a common learning disability among children with NF1.
In a previous research study, researchers explored what type of tutoring program was most beneficial to children and adolescents with NF1. Results from that study suggest they may benefit from a remedial reading program that involves learning the various sounds of letter combinations using a multisensory approach that emphasizes auditory, visual, and tactile processes.
My family and I have been fighting NF together since I was a baby. I have had multiple surgeries over the years to try that make me feel as comfortable as possible. My mom also has NF. Although I am grateful for the life she and my father gave me, I don’t want kids. With the current state of the world, I don’t want to bring in a child to this world with NF. In my eyes, I think it would be a lot more difficult to be a child in this era then it was in my childhood.
We learned of Layla's NF1 diagnosis when she was only 1 week old.
Layla suffers from severe headaches; there are three growths in her brain stem and one on her spine. She also has restless leg syndrome and ADHD. She has had four eye surgeries since birth.