Urgent surgery & research into Schwannomatosis
Donation protected
Naomi needs your help.
In short: we are hoping to urgently raise money towards the surgical removal of a rare tumour recently discovered in Naomi’s nose and that requires surgery ASAP.
This money will also enable the further testing of that tumour to help identify the chromosomes that caused it, which could lead to early diagnosis of the rare condition for future generations effected by NF by means of a simple blood test.
The gene that caused Naomi’s version of the disorder has still not been identified and so this research is vital to help manage the disease and will be undertaken by the team at St Vincent’s Clinical Genomics department in Sydney.
We thank you for any money you are able to donate (it is true that every penny counts!) and if you are not able to donate, perhaps you could share this page instead to help us raise awareness of this little know disease.
Many thanks!
—
For those who would like more information: Naomi has been dealing with a genetic disorder called Schwannomatosis, a rare form of neurofibromatosis (NF) that has only recently been identified.
The genetic disorder affects less than 1 in 40,000 people, and causes the development of non-cancerous tumours called schwannomas; these are benign but cause pain and damage to whatever they are close to — usually on the spinal and peripheral nerves.
For many people with NF, tumours are normal, they grow on nerves in the brain and throughout the body. It is progressive and unpredictable and treatment options are limited.
Naomi’s first tumour by her eye was discovered when she was when she was 13 years old and was luckily removed before it could do any damage to her sight or surrounding nerves. This discovery has led to various cancer, neurological and trial clinics to try and find out more about the condition and resulted in a total of seven surgeries to date, as other tumours have cropped up.
In recent years, there has been dramatic findings in what causes the disease meaning she is now able to be monitor with greater precision and was finally diagnosed in 2010.
So in the quest to discover more about the condition and to help with the early diagnosis of future generations, including her 2-year-old son, Naomi and the team in St Vincent’s Hospital are carrying out this surgery and are very grateful for your kind support.
Should we be lucky enough to exceed our target, any money left over will be donated to the Children’s Tumour Foundation of Australia, for whom Naomi has campaigned for previously and is raising money for in their annual Cupid’s Undie Run on 22nd March 2020.
In short: we are hoping to urgently raise money towards the surgical removal of a rare tumour recently discovered in Naomi’s nose and that requires surgery ASAP.
This money will also enable the further testing of that tumour to help identify the chromosomes that caused it, which could lead to early diagnosis of the rare condition for future generations effected by NF by means of a simple blood test.
The gene that caused Naomi’s version of the disorder has still not been identified and so this research is vital to help manage the disease and will be undertaken by the team at St Vincent’s Clinical Genomics department in Sydney.
We thank you for any money you are able to donate (it is true that every penny counts!) and if you are not able to donate, perhaps you could share this page instead to help us raise awareness of this little know disease.
Many thanks!
—
For those who would like more information: Naomi has been dealing with a genetic disorder called Schwannomatosis, a rare form of neurofibromatosis (NF) that has only recently been identified.
The genetic disorder affects less than 1 in 40,000 people, and causes the development of non-cancerous tumours called schwannomas; these are benign but cause pain and damage to whatever they are close to — usually on the spinal and peripheral nerves.
For many people with NF, tumours are normal, they grow on nerves in the brain and throughout the body. It is progressive and unpredictable and treatment options are limited.
Naomi’s first tumour by her eye was discovered when she was when she was 13 years old and was luckily removed before it could do any damage to her sight or surrounding nerves. This discovery has led to various cancer, neurological and trial clinics to try and find out more about the condition and resulted in a total of seven surgeries to date, as other tumours have cropped up.
In recent years, there has been dramatic findings in what causes the disease meaning she is now able to be monitor with greater precision and was finally diagnosed in 2010.
So in the quest to discover more about the condition and to help with the early diagnosis of future generations, including her 2-year-old son, Naomi and the team in St Vincent’s Hospital are carrying out this surgery and are very grateful for your kind support.
Should we be lucky enough to exceed our target, any money left over will be donated to the Children’s Tumour Foundation of Australia, for whom Naomi has campaigned for previously and is raising money for in their annual Cupid’s Undie Run on 22nd March 2020.
Fundraising team (2)
Shelley Foster
Organizer
Zetland, NSW
Naomi Elkin-Jones
Team member