Guest blog by Joanne Ward, Chief Operations Officer, NF2 Biosolutions UK
I haven’t written a blog before but have shared my story in case it helps others along on their journey. They say sharing your story of how you overcome things is someone else’s survival guide!
More details of the supported research are available at https://www.ncaresearch.org.uk/news/charity-supports-research-incurable-genetic-condition/
The search for funding of this and the need to get our charity better known has since led us to several different avenues.
There are around 7000 different rare diseases and so it was important that our voice was/is heard in the rare disease arena and thus we have become members of the Genetic Alliance UK patients’ groups and regularly attend their members chat. Gene people are also listing us on their next website update.
Tumours and Brain tumours in particularly are a large part of our condition and we are just embarking on several collaborations in the brain tumour area as it is hoped that our research can benefit not just those affected by NF2 but sporadic vestibular schwannomas and meningioma also and possibly other low grade brain tumours. It is an exciting arena to be in if we can make a difference with our research to so many.
So, onto the future and where we would like to be, obviously our research at the GJBRC is the most important thing we have on going and we need to finance that as a charity so, community fundraising efforts are first and foremost and we are approaching trusts and foundations to help with that. We would love a corporate partnership that could help with that also so that’s something we will be working on alongside the community and trusts fundraising.
We have more meetings lined up about collaborations with organisations both in the rare disease space and brain tumours space. We are also wanting the NF2 community and researchers to understand what they mean to each other so we are keen for them to meet virtually and look forward to organising some zoom chat sessions so that we can understand more about what research is being done.
And ultimately ensuring our research is not just for research’s sake and making it a priority that any new drugs found through research do actually make it to NF2 patients, because we are in desperate need of new treatments.
In the UK about 1900 people are affected by NF2 (incl. 330 children). At the present time only 40% of children are diagnosed in childhood. We need to ensure the physical and emotional wellbeing of these children as they grow up without the need for invasive surgeries or treatments that may rob them of their nerve functions one at a time which is the current scenario.
My drive for doing all this? ….. Well my 10 year old son has inherited this condition from me. It can be a cruel and debilitating condition and I cannot sit by and let NF2 take his future, so he is my drive to making the world a better place for those with NF2. There have been many medical advances since my diagnosis back in 1999, and I hope that at least in my lifetime to see better advances towards treatments that offer better quality of life and who knows hopefully a cure. My son already has mobility problems, a cataract and hearing loss. He deserves a better future.
We need positive patient impact and to Improve the quality of life & extend life; to improve goals, expectations & standards; to improve emotional & physical wellbeing and reduce levels of stress or anxiety associated with psychosocial factors.
We need to do all of this and we need to find these treatments as a matter of urgency.
About the Author
Joanne Ward is the Chief Operations Officer, NF2 Biosiolutions UK
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