Donna encourages people to not fear NF, but to recognise and understand it. She wants others to celebrate difference and embrace diversity.
Donna has been a supporter of the Children's Tumour Foundation (CTF) for a number of years. Since 2018, she has volunteered to manage and coordinate the largest community fundraising event for the CTF, the Cupid’s Undie Run. It is through her role as race director, that Donna was able to build a support network for the NF community in Perth that effectively united NF families from across the state.
Donna manages community days and advocates for awareness through various CTF campaigns in order to promote inclusion and celebrate diversity. She has created a sense of belonging for NF families who had previously reported feeling neglected and ostracised due to the visible differences and disabilities that can be caused by NF.
It is through her advocacy, fundraising and determination to improve the lives of those living with NF that the CTF have been able to extend their footprint to Western Australia and fund a family camp for local NF families. Camps and community days are vital to the socio-emotional wellbeing of those impacted by NF, as they provide a safe place, without fear of judgement or ridicule.
Promoting the importance of inclusion and improving general awareness of NF is a personal mission for Donna as her daughter, Seren has NF from a spontaneous mutation and has started to develop some visible tumours.
Seren has since developed an optic glioma and has had several surgeries to remove external tumours that were itching and the reason she was being bullied at school.
Donna is a hero in Western Australia because previously this state had minimal access to support groups and services. She took the initiative to work with the CTF in a volunteer capacity to become a state representative and advocate for all NF families.
She has fostered positive community attitudes towards inclusion and a general acceptance of people with disabilities and visible differences, and has dramatically improved awareness of NF.
If Donna is successful, the CTF will use its grant to run a camp for families impacted by NF - the first to be run in Western Australia.
These camps have a proven, positive impact on the mental health of the entire family. Most NF families are under stress and many also experience social disadvantage and isolation. These NF Family camps are an opportunity to relax and unwind, be updated on latest NF health management and to form lifelong connections to CTF staff and each other.
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