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A Colourful 5K Challenge

29 April 2021

My 9-year-old daughter, Poppy, has recently been diagnosed with NF1. It has turned our world upside down and has been quite a lot to take in. NTUK has been such a supportive tool for us as a family. The nurses are on hand to offer advice and support. 

One of the most daunting things about the diagnosis is that almost every person I have spoken to, including some medical professionals, have not heard of NF1. Speaking to someone and being part of the community group and listening to specialists who are involved in research and who know exactly what NF1 is has been a real support. 

I work in a primary school and in Liverpool, we have quite a high number of SEND children across the city. It really struck me that after being in education for almost 20 years that I, or a lot of my colleagues, have not heard of this condition, which is more common than cystic fibrosis for example! Because of this, we have managed to get copies of the 'Friends' book into schools in the North Liverpool Learning Network. My aim is to raise awareness. Awareness to parents, especially of SEND children as NF1 is linked so closely to learning difficulties, awareness to children and awareness to staff. For a long time, I believed that my daughter had lots of birthmarks. I had no idea that cafe au lait marks looked like birthmarks.  

Now that we have the diagnosis it explains so much. Our daughter has trouble with balance, fine and gross motor skills, and memory. We now understand why. She is an amazing little girl who is the kindest and caring soul. She puts others before herself and lives her life to the full. She has many friends and she does not let her NF hold her back. She loves to sing, swim, climb and enjoys the many adventures we go on as a family. She amazes me every day and I know she will use her condition to teach others how to embrace their differences and stand tall.

World Neurofibromatosis Awareness Day - 5K Colour Challenge 

Poppy really wants to raise awareness and even though she is too young to join us in the colour run obstacle dash, she will be there cheering us on. The teachers in the school are really eager to support charity events and we have 19 participants so far. Together we can raise awareness and offer the support that is needed to our NF community. 

The colour run will be on Sunday 16 May at Aintree Racecourse, Liverpool. 

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Pierre Wolkenstein, MD, PhD, Hopital Henri-Mondor, Paris, France

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

Sirkku Peltonen, MD, PhD, University of Gothenberg, Sweden

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

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Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches - Said Farschtschi

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Prof. Ellen Denayer, University Hospital of Leuven, Belgium

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Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

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Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

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Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

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INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

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Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK