Helpline 07939 046 030

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. 

Filter News

Filter by Date

Carers Rights Day. Diane’s Story

Find out more about Diane's life as a carer and how more should be done for unpaid carers in the UK

Read More

NF1 PN Impact on Patients’ and Caregivers’ Lives

If you have NF1 with plexiform neurofibromas or you care for someone with NF1 PN help shape future healthcare support

Read More

Shae’s Story

Read Shae's journey with NF and how she is taking life head on.

Read More

24 Hour Marathon – Three Brothers Running for the Fourth

Toby, James & Alex take on an epic 24 hour marathon race to commemorate their brother Tristan

Read More

Centre for Appearance Research NF Survey - Results

Find out how you can take part in CAR's online survey about NF parenting and caring experiences.

Read More

Share your Covid-19 Story - Survey Results

Embracing Complexity share the results of their impact of Covid19 survey, find out more

Read More

Sarah’s Journey

Read Sarah's personal journey with NF

Read More

Hour of Power – Love Yourself Valentine’s Day workout for NF

Thanks to all those that got their hearts pumping this Valentine's Day for our NF community!

Read More

Rare Disease Day 2021 and Rare Reach Festival

Find out how you can get involved in the first ever Rare Reach Festival and make sure the Rare communities voice is heard!

Read More