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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

 



 

Fun With Therapy

'Fun with Therapy' is for various levels of abilities.

Any pictures shown on therapy are only to give a general idea.

We would recommend that you always consult with your own Physio and Occupational Therapist before trying out new ideas.

Experience of other parents is that therapy goes much better and more is accomplished when you work at your childs pace rather than forcing your child to complete a series of exercises under protest.

You should never make your child do something that they are uncomfortable with.

Sometimes it is good to have a short rest from therapy!



Fun With Hands | Print |

Here are some ideas to have fun with your hands using different texture which is good therapy for those who have any sensory issues around touch.

Pudding Paint

Below is a recipe for pudding paint, the idea being that you can get your hands or fingers in the texture which is thicker than paint and use them to paint or mark.

Read more...
 
Therapy Equipment & Materials | Print |

You may not always want to purchase Specialist Therapy Equipment and this has to be a personal choice.

Below we have listed some simple and cheaper alternatives for you to consider.

If you have found any that are not listed here and feel they may be of interest to others please feel free to share your finds with us via This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Read more...
 
Using A Roll | Print |

Ideas for using a Roll

Try to ensure the roll is the correct height so that when in a sitting position your child's feet reach the floor with hips and knees at right angles.

Any movement exercises must be done at a slow and controlled pace to be effective.

Never leave your child unattended on the Roll.

Read more...
 


Disclaimer
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.
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