27 April 2021
World Neurofibromatosis Awareness Day 2021
As many of you get ready to take part in our 2.6 mile Garden Challenge for World NF Day 2021, we want to hear from you your motivations for taking part!
Some of you may be doing this to help Shine A Light on NF or to support family and loved ones affected by Neurofibromatosis. Maybe you're simply doing it to get fit - whatever the reason, share your message with us.
"I am doing this as I have NF and my dad had it. I have a brain tumour and my sight has been affected by NF, I have lots of lumps on me and I’m in pain with it."
"We are taking part in the 2.6 garden challenge, we have a group of 30 young runners ranging from 2 years to 13 years old. We are running around our local rugby field with their support. All the kids and the adults are getting involved & dressing up in blue outfits. We have the local ice cream man arriving and the club will have the bar open for the grownups.
I have twin girls of 6 years old, Hettie & Millie - Hettie was diagnosed with NF1 at age 2 & up to now she leads a very normal life. This is our 2nd fundraising event for Nerve Tumours UK, as we did a 10km run a few years ago. I love now that the children can be involved themselves, especially Hettie and Millie as I want them to have a good understanding of Neurofibromatosis. I think it's so important they are aware of any complications that Hettie may come across in the future and to not be worried, your charity is amazing for offering support to families and if we can do something fun to support it, and talk about NF openly within our family then the children won't be alarmed or frightened at future appointments." - Mum, Jo
Amelia, Christian & Ellie's 2.6 Mile Challenge
When Christian was born, I noticed he had something on his head but was told this was just from being born and the skull would harden. After pushing for a second opinion and having multiple scans, we found out he had NF1. This was very overwhelming as a parent. Christian is the first in our family (that we know of) to be diagnosed. Christian’s a very sociable child, enjoying nursery and making friends which is a relief. His Café Au Lait marks are growing as he gets older and as a parent, you can’t help but worry about how his NF1 will affect him as he gets older.
The NF doctors and specialists Christian has seen are amazing, they keep us up to date with any changes and we can’t fault them on the care they provide. We have a long journey ahead but to know there are people out there to help and talk to definitely makes it that bit easier.
After Christian’s diagnosis, I found some social media groups and found Nerve Tumours UK, which gave us loads more information about NF. We have previously fundraised for Nerve Tumours UK and raised a substantial amount, this year we have already beaten our previous efforts and fingers crossed we can raise even more!
If your planning on taking part in our 2.6 mile Garden Challenge, please share your story & photos with us at firstname.lastname@example.org
If you haven’t already signed up to take part, register below and join the day of action!
We can support you, contact our fundraising team at: email@example.com
Every step you take in your garden, local park, treadmill or on the spot helps raise awareness for the 26,500 people affected by Neurofibromatosis in the UK and helps support us to carry out our work. Any donations you make, big or small, go a long way to help make sure we can continue and expand our Specialist Neurofibromatosis Nurses Network, so we can provide the best care possible for your loved ones affected by NF.
Check out last year's Garden Marathon on World NF Day 2020 -
On Sunday 17th May 2020, World Neurofibromatosis Awareness Day, you took to your gardens to run our 2.6 miles and for the younger ones 1 mile. This was a great effort that got you and your family active whilst raising awareness in the current situation.
Your efforts helped to Shine A Light on Neurofibromatosis across all our social media channels, helping us to raise awareness for the 26,500 affected by NF in the UK and raise vital funds to support our amazing Specialist NF Nurses and keep our services up and running, supporting our NF community.
Have a look at our community members getting fit on their way to their drinking stations.
Liz Thomas & Family
Kloe & Family
Thank you so much to everybody that took part and who donated to us as part of our garden challenge.
It's people like you who really make a difference, so thank you!
If you took part in our 2.6 mile garden challenge, please share photos/ videos of your adventures to firstname.lastname@example.org
Kate “NF1 Mummy” Your Questions on parenting answered: World Neurofibromatosis Day 17 May 2021
Have you got questions about your child’s NF diagnosis? Send them into us for World NF Awareness DayRead More