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




Below is a selection of Poems we would like to share with you.
If you have never read "Welcome to Holland" we highly recommend you do.

Attention Everyone In The Swimming Pool | Print |

Attention Everyone In The Swimming Pool

Courtesy of Kidzaware/Special Abilities

I have an announcement. You're likely to stare at my son Stanley because he has Down's Syndrome. Also, being as he only a pair of trunks on, you will clearly be able to see his scar - this is from two heart operations. Impressive, huh? Anyway, if you could get the staring over as soon as possible I'd very much appreciate it, as my family and I would like to enjoy our swim this morning."

... well, I didn't say the above but I wish I had, because people really do stare. Now that Stan is a year old I can spot an oncoming stare a mile off. I am, in fact, a stare master. Let me introduce you to ...

The 'stare' necessities

Your guide to the staring possibilities available out there.

Celebrating Holland | Print |

Celebrating Holland - I'm Home
By Cathy Anthony
(My follow-up to the original Welcome to Holland by Emily Perl Kingsley)

I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned.

I reflect back on those years of past when I had first landed in Holland.  I remember clearly my shock, my fear, my anger, the pain and uncertainty.  In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay.

Hope | Print |


Author Unknown

If you can look at the sunset and smile, then you still have hope.

If you can find beauty in the colours of a small flower, then you still have hope.
If you can find pleasure in the movement of a butterfly, then you still have hope.

The Butterfly | Print |

The Butterfly
Author Unknown

Once upon a time in a land far, far away. There was a wonderful old man who loved everything. Animals, spiders, insects....

One day while walking through the woods the nice old man found a cocoon.
Feeling lonely he decided to take the cocoon home to watch its beautiful transformation from a funny little cocoon to a beautiful butterfly. He gently placed the cocoon on his kitchen table, and watched over it for days.

Welcome To Holland | Print |

“Welcome to Holland"
By Emily Perl Kingsley, 1987.  All rights reserved.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans.


Information contained on this website is not intended to replace information you have received from Doctors or other Health Professionals.
You should always consult with a Medical Professional for medical advice.
JSUK does not endorse any products nor can we be held responsible for any external links and their content.
Copyright 2010 - 2015  WWW.JSUK.ORG