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Our Syndrome. Your Information.

Our best hope for finding new treatments and raising awareness is your participation in JS-LIFE, the JSRDF patient-centered registry.

Whether you are affected, a caregiver, or related to someone who is or was affected, your information* could be the key. Please take a few moments to answer a few questions today.
*only one survey is necessary per affected individual


 

Joubert Syndrome UK

 



 

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Profile: Faith

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Faith
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About Me:

Hi
I'm Faith, I set up JSUK as there was not a support group for families in the UK of children with JS.
It has been pleasure and privilege to meet so many families living with JS both as parents and adults and I hope we can continue to grow as a support group to continue reaching out to families.
On a personal note I'm married to Dave, I have 5 children, all boys, Jake being the youngest and has JS. Dave has 2 boys too so I'm outnumbered, fortunately I'm not too girly and enjoy computers & gadgets as much as they do!

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Posts:
7
Latest Post:
11-Aug-11 14:56:45
Registered:
24-Nov-10 00:54:15

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