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

Catherine Hehir
2015-12-04 10:09:21 +1300
Ruth O'Connell
2015-12-03 13:46:51 +1300
Rebekah Wilson
2015-12-02 07:02:43 +1300

"You are such a strong, brave and gorgeous lady. What a fantastic cause - good on you! Love B,D and baby E xxx "

Tamara
2015-12-01 09:29:53 +1300
Glenys
2015-11-30 13:15:32 +1300

"What a fantastic idea Jenny x"

Judy Kerr
2015-11-29 21:11:28 +1300

"All the best "

Cate O'Connell
2015-11-29 13:30:42 +1300

"Just like having a baby Jenny!!! Come on - one more push!!!!"

Daz Isaac
2015-11-28 20:28:38 +1300
Tim Hehir
2015-11-28 11:43:07 +1300
Glenn upton
2015-11-26 16:25:47 +1300

"A great cause that i am glad to help."

Chris Welch
2015-11-24 18:08:12 +1300

"Dear Jen This is from Chris and Dez, xx"

Bernadette Grogan
2015-11-24 16:30:14 +1300

"Every success with this, Jenny. Hope you make it! "

Carrie Hehir
2015-11-23 20:45:02 +1300

"Great campaign Jenny for a great cause!! Good luck! Xxxx"

Alan
2015-11-15 20:36:53 +1300
Jan Win
2015-11-15 16:56:48 +1300
Rebecca Win
2015-11-15 16:18:07 +1300

"Jenny you are one amazing woman. I fully support you and have always been immensely proud of you"

stephen
2015-11-11 22:03:01 +1300
Hannah Frances O'Connor
2015-11-10 10:34:34 +1300
Tara Crocker
2015-11-09 11:16:55 +1300
Mat Tait
2015-11-09 06:17:56 +1300
F C Bannister
2015-10-24 20:31:47 +1300
Nikki du Fresne
2015-10-22 07:17:29 +1300

"All the best with this project Jennie - excellent idea"

Debbie Samuel
2015-10-19 12:56:54 +1300
Alice Fryer
2015-10-19 12:48:51 +1300

"Go for it Jenny Penny!!!! xxxx"

Melanie Neeley
2015-10-17 17:37:31 +1300

"I love this idea, good luck from us in Whitby. Cheers, Mel and Rob"

Chantell Bramley
2015-10-17 07:30:42 +1300

"What a great idea Jenny! Your knowledge on this condition will be so helpful for people newly diagnosed and their family and friends. X"

Barry Hennessy
2015-10-16 10:33:09 +1300
Gloria Sigglekow
2015-10-14 18:43:11 +1300
Judy Fleming
2015-10-14 14:46:43 +1300
Brenda Kerr
2015-10-12 09:40:48 +1300

"keep it up jen your amazing"

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.

Catherine Hehir
2015-12-04 10:09:21 +1300
Ruth O'Connell
2015-12-03 13:46:51 +1300
Rebekah Wilson
2015-12-02 07:02:43 +1300

"You are such a strong, brave and gorgeous lady. What a fantastic cause - good on you! Love B,D and baby E xxx "

Tamara
2015-12-01 09:29:53 +1300
Glenys
2015-11-30 13:15:32 +1300

"What a fantastic idea Jenny x"

Judy Kerr
2015-11-29 21:11:28 +1300

"All the best "

Cate O'Connell
2015-11-29 13:30:42 +1300

"Just like having a baby Jenny!!! Come on - one more push!!!!"

Daz Isaac
2015-11-28 20:28:38 +1300
Tim Hehir
2015-11-28 11:43:07 +1300
Glenn upton
2015-11-26 16:25:47 +1300

"A great cause that i am glad to help."

Chris Welch
2015-11-24 18:08:12 +1300

"Dear Jen This is from Chris and Dez, xx"

Bernadette Grogan
2015-11-24 16:30:14 +1300

"Every success with this, Jenny. Hope you make it! "

Carrie Hehir
2015-11-23 20:45:02 +1300

"Great campaign Jenny for a great cause!! Good luck! Xxxx"

Alan
2015-11-15 20:36:53 +1300
Jan Win
2015-11-15 16:56:48 +1300
Rebecca Win
2015-11-15 16:18:07 +1300

"Jenny you are one amazing woman. I fully support you and have always been immensely proud of you"

stephen
2015-11-11 22:03:01 +1300
Hannah Frances O'Connor
2015-11-10 10:34:34 +1300
Tara Crocker
2015-11-09 11:16:55 +1300
Mat Tait
2015-11-09 06:17:56 +1300
F C Bannister
2015-10-24 20:31:47 +1300
Nikki du Fresne
2015-10-22 07:17:29 +1300

"All the best with this project Jennie - excellent idea"

Debbie Samuel
2015-10-19 12:56:54 +1300
Alice Fryer
2015-10-19 12:48:51 +1300

"Go for it Jenny Penny!!!! xxxx"

Melanie Neeley
2015-10-17 17:37:31 +1300

"I love this idea, good luck from us in Whitby. Cheers, Mel and Rob"

Chantell Bramley
2015-10-17 07:30:42 +1300

"What a great idea Jenny! Your knowledge on this condition will be so helpful for people newly diagnosed and their family and friends. X"

Barry Hennessy
2015-10-16 10:33:09 +1300
Gloria Sigglekow
2015-10-14 18:43:11 +1300
Judy Fleming
2015-10-14 14:46:43 +1300
Brenda Kerr
2015-10-12 09:40:48 +1300

"keep it up jen your amazing"

Followers of Neurofibromatosis Support Webpage

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