Neurofibromatosis Support Webpage
By Jenny
PledgeMe.Project
I want to embed this project somewhere
NZ $2,010 pledged
47 people pledged
Closed
NZ $2,000 minimum target
This campaign was successful and closed on 07/12/2015 at 9:00 AM.
Make a PledgeAbout
Neurofibromatosis Support Webpage
Project 2015-10-01 13:06:47 +1300
Hello!!
My name is Jen and 15 years ago I was diagonsed with a rare genetic condition called Neurofibromatosis type 2. There are 2 forms of this condition. The more common form is Neurofibromatosis type 1 which is generally picked up in childhood. Sufferers often have light brown spots/markings (cafe au lait marks), 2 or more tumours on the iris of the eye, tumour on the optic nerve and/or abnormal developement of the spine. The rarer form Neurofibromatosis type 2 is often characterized by Bilateral Accoustic Neuromas and benign tumours in the brain and spine.
Over the past 15 years I have under gone numerous surgeries and medical proceedures (some pleasant, some not so pleasant) and throughout these times my family and I have spent countless hours on the internet and reading books/medical journals/pamphlets to understand more about my condition.
Six years ago when I was in my mid-20's I became Profoundly Deaf due to tumours pressing on my auditory nerve (Bilateral Accoustic Neuromas). This was a massive blow for my new husband and I as life had been pretty much normal for the previous 9 years. However, all is not lost as in the past 6 years I've had two beautiful boys, worked in fabulous jobs and have met some amazing people.
Through all of this though I've struggled to find a support network that resonated with me. There are an awful lot in the US and UK but not so much in the Southern Hemisphere. Theres lots and lots and LOTS of information out there but predominately on NF1. This is through no fault of anyones, it's just one of those complex conditions.
The Project
What has started out over the years as people telling me to get my story out there (I'm an incredibly private person when it comes to my life - especially my health) has now morphed into 'what would be the best for fellow sufferers and their families & friends?' As I've looked back over my journey, there needs to be more support out there. Yes the condition is rare but more and more people are being diagnosed with it quicker as medicine advances.
So, I would like to set up a webpage that will be informative, a place for people to share their stories and with links to other websites related to this condition and the latest research. There is so much out there that (hopefully) this will be a place that people will find easy to navigate in what can be a scary and confusing time.
The webpage will built over the next 4-6 months as I will be in contact with medical organisations overseas and here in New Zealand, obtaining legal advice, doing my own research (lots of time on the internet!!) and designing the site. My husband is a journalist and works full time and I've got 2 toddlers at home so this will fit in around our home/work life.
The Cost
As with anything these days, there is a cost involved. I've estimated the total cost of the project being $2000 (domain name, legal advice and all the other wee bits and pieces that will pop up).
Comments
Updates
Hey! Thanks for checking out this project.
We haven't made any updates yet, follow us if you want to be notified when we do.
Pledgers 47
10/10/2015 at 12:41pm
"Good on you Jen! Arohanui e kare!"
09/10/2015 at 8:50pm
09/10/2015 at 11:41am
09/10/2015 at 11:40am
"So very proud of you Jenny, you are always helping others. Lots of love from Glennis & Allen and farnow"
09/10/2015 at 11:31am
"Amazing idea Jen well done xo"
09/10/2015 at 9:59am
09/10/2015 at 9:44am
09/10/2015 at 9:09am
08/10/2015 at 8:50pm
"If anyone can do it you can. Go Jen !! Mum & Dad "
08/10/2015 at 8:09pm
08/10/2015 at 7:32pm
"This is really ballsy of you Jenny. I admire your courage as this can't be an easy thing. Wishing you all the best from my family to yours x"
08/10/2015 at 6:35pm
08/10/2015 at 5:47pm
"Fantastic idea Jen!"
08/10/2015 at 5:46pm
08/10/2015 at 5:32pm
08/10/2015 at 5:27pm
08/10/2015 at 5:14pm
"Great work Jen...Pete and I right behind you....."
Followers 4
Followers of Neurofibromatosis Support Webpage
Neurofibromatosis Support Webpage
Project 2015-10-01 13:06:47 +1300
Hello!!
My name is Jen and 15 years ago I was diagonsed with a rare genetic condition called Neurofibromatosis type 2. There are 2 forms of this condition. The more common form is Neurofibromatosis type 1 which is generally picked up in childhood. Sufferers often have light brown spots/markings (cafe au lait marks), 2 or more tumours on the iris of the eye, tumour on the optic nerve and/or abnormal developement of the spine. The rarer form Neurofibromatosis type 2 is often characterized by Bilateral Accoustic Neuromas and benign tumours in the brain and spine.
Over the past 15 years I have under gone numerous surgeries and medical proceedures (some pleasant, some not so pleasant) and throughout these times my family and I have spent countless hours on the internet and reading books/medical journals/pamphlets to understand more about my condition.
Six years ago when I was in my mid-20's I became Profoundly Deaf due to tumours pressing on my auditory nerve (Bilateral Accoustic Neuromas). This was a massive blow for my new husband and I as life had been pretty much normal for the previous 9 years. However, all is not lost as in the past 6 years I've had two beautiful boys, worked in fabulous jobs and have met some amazing people.
Through all of this though I've struggled to find a support network that resonated with me. There are an awful lot in the US and UK but not so much in the Southern Hemisphere. Theres lots and lots and LOTS of information out there but predominately on NF1. This is through no fault of anyones, it's just one of those complex conditions.
The Project
What has started out over the years as people telling me to get my story out there (I'm an incredibly private person when it comes to my life - especially my health) has now morphed into 'what would be the best for fellow sufferers and their families & friends?' As I've looked back over my journey, there needs to be more support out there. Yes the condition is rare but more and more people are being diagnosed with it quicker as medicine advances.
So, I would like to set up a webpage that will be informative, a place for people to share their stories and with links to other websites related to this condition and the latest research. There is so much out there that (hopefully) this will be a place that people will find easy to navigate in what can be a scary and confusing time.
The webpage will built over the next 4-6 months as I will be in contact with medical organisations overseas and here in New Zealand, obtaining legal advice, doing my own research (lots of time on the internet!!) and designing the site. My husband is a journalist and works full time and I've got 2 toddlers at home so this will fit in around our home/work life.
The Cost
As with anything these days, there is a cost involved. I've estimated the total cost of the project being $2000 (domain name, legal advice and all the other wee bits and pieces that will pop up).
Comments
Hey! Thanks for checking out this project.
We haven't made any updates yet, follow us if you want to be notified when we do.
10/10/2015 at 12:41pm
"Good on you Jen! Arohanui e kare!"
09/10/2015 at 8:50pm
09/10/2015 at 11:41am
09/10/2015 at 11:40am
"So very proud of you Jenny, you are always helping others. Lots of love from Glennis & Allen and farnow"
09/10/2015 at 11:31am
"Amazing idea Jen well done xo"
09/10/2015 at 9:59am
09/10/2015 at 9:44am
09/10/2015 at 9:09am
08/10/2015 at 8:50pm
"If anyone can do it you can. Go Jen !! Mum & Dad "
08/10/2015 at 8:09pm
08/10/2015 at 7:32pm
"This is really ballsy of you Jenny. I admire your courage as this can't be an easy thing. Wishing you all the best from my family to yours x"
08/10/2015 at 6:35pm
08/10/2015 at 5:47pm
"Fantastic idea Jen!"
08/10/2015 at 5:46pm
08/10/2015 at 5:32pm
08/10/2015 at 5:27pm
08/10/2015 at 5:14pm
"Great work Jen...Pete and I right behind you....."