INDEX
Magazine
Global Network of Neurofibromatosis Patient Organisations
Dear NF Community,
My name is Karin Hoogendijk and I am the president of NF Patients United. As you know, May is an especially important month for the global NF community because it’s Neurofibromatosis Awareness Month! Accordingly, our member organisations have meaningful events planned such as the ‘Shine a Light on NF’ Campaign and much more. You can find all upcoming activities in the NFPU Calendar!
In this edition we take a closer look at Juvenile myelomonocytic Leukemia (JMML) in NF1, which is a rare blood cancer that mainly affects young children. We had the chance to talk to Dr. Elliot Stieglitz, an American Pediatric hematologist-oncologist who focuses on treating JMML. Additionally, we’ve looked at some interesting research and at promising treatment approaches.
Regarding mental health, we spoke to the Austrian clinical psychologist Nina Fasan on how to cope with having learning difficulties that are related to NF1. She gives helpful advice she gained from real-life experience in working with young children with NF1 and learning difficulties.
Our Hero of the Month, Lucas from Georgia, US, is a young boy with NF1 who survived JMML and now continues to enjoy his adolescent years to the fullest. His story is sure to inspire and give strength to many in the NF1 community!
We are also featuring the Czech organization NF Česko in this edition, our new member organization in Czech Republic. Co-Founder Lucie Heroutova speaks about why she founded the association and how she plans to support Czech patients with NF1, NF2-related Schwannomatosis and Schwannomatosis.
Lastly, we want to say Thank You for your ongoing support of NF Patients United and this magazine. In honour of NF Awareness Month, we ask you to make a donation so we can continue spreading the word about NF and helping people affected by all forms of Neurofibromatosis. Every contribution, no matter how small, makes a difference!
With gratitude and warm wishes,
The NFPU Team and NFPU president Karin Hoogendijk
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