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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

 



 

Poems

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.

Read more...
 
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.

Read more...
 
Hope | Print |

HOPE

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.

Read more...
 
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.

Read more...
 
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.

Read more...
 


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