Neurofibromatosis Support Webpage

By Jenny

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NZ $2,010 pledged


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Pledges will only be confirmed if the target is reached by: 07/12/2015 at 9:00 AM (NZDT)

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About

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

Cate O'Connell
2015-10-10 12:41:24 +1300

"Good on you Jen! Arohanui e kare!"

Niels Fladkjar
2015-10-09 20:50:34 +1300
Michelle Isaac
2015-10-09 11:41:40 +1300
Allen & Glennis Hennessy
2015-10-09 11:40:59 +1300

"So very proud of you Jenny, you are always helping others. Lots of love from Glennis & Allen and farnow"

Amy Hennessy
2015-10-09 11:31:31 +1300

"Amazing idea Jen well done xo"

G. A. O'Connell
2015-10-09 09:59:40 +1300
David Armstrong
2015-10-09 09:44:27 +1300
Owen Bannister
2015-10-09 09:09:47 +1300
Moh & Dors
2015-10-08 20:50:19 +1300

"If anyone can do it you can. Go Jen !! Mum & Dad "

Vicky Hennessy
2015-10-08 20:09:06 +1300
Rebecca Wilson
2015-10-08 19:32:37 +1300

"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"

Darth Sidious
2015-10-08 18:35:32 +1300
LEA
2015-10-08 17:47:34 +1300

"Fantastic idea Jen!"

Alyna Higgs-James
2015-10-08 17:46:59 +1300
Liam Hehir
2015-10-08 17:32:13 +1300
Stacey Schroder
2015-10-08 17:27:07 +1300
Stephanie
2015-10-08 17:14:55 +1300

"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.

Cate O'Connell
2015-10-10 12:41:24 +1300

"Good on you Jen! Arohanui e kare!"

Niels Fladkjar
2015-10-09 20:50:34 +1300
Michelle Isaac
2015-10-09 11:41:40 +1300
Allen & Glennis Hennessy
2015-10-09 11:40:59 +1300

"So very proud of you Jenny, you are always helping others. Lots of love from Glennis & Allen and farnow"

Amy Hennessy
2015-10-09 11:31:31 +1300

"Amazing idea Jen well done xo"

G. A. O'Connell
2015-10-09 09:59:40 +1300
David Armstrong
2015-10-09 09:44:27 +1300
Owen Bannister
2015-10-09 09:09:47 +1300
Moh & Dors
2015-10-08 20:50:19 +1300

"If anyone can do it you can. Go Jen !! Mum & Dad "

Vicky Hennessy
2015-10-08 20:09:06 +1300
Rebecca Wilson
2015-10-08 19:32:37 +1300

"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"

Darth Sidious
2015-10-08 18:35:32 +1300
LEA
2015-10-08 17:47:34 +1300

"Fantastic idea Jen!"

Alyna Higgs-James
2015-10-08 17:46:59 +1300
Liam Hehir
2015-10-08 17:32:13 +1300
Stacey Schroder
2015-10-08 17:27:07 +1300
Stephanie
2015-10-08 17:14:55 +1300

"Great work Jen...Pete and I right behind you....."

Followers of Neurofibromatosis Support Webpage

This campaign was successful and got its funding on 07/12/2015 at 9:00 AM.