I hope everyone is ready for the warm weather and outside activities.  Before we know it, Summer will be here!  Yikes, only 1 year away from the next conference!  We have not yet decided upon a location due to unforeseen circumstances.  We are, however, leaning towards Atlanta, Georgia.  I will be traveling to Atlanta in May to check out several hotels.  Please continue to check out the JSF&RCD website for updates on the selected location.  As soon as a decision is made, we will post the information on our website and include details in a future issue of The Rainbow. 

I am looking for individuals within our foundation who would like to assist with the conference and join our conference committee.   If you have any special talents, ideas, contacts in the Atlanta area, or any suggestions for the next conference, please email, or call, me with any and all offers of assistance!  Feedback we receive after each conference confirms that the conferences get better and better each year—due to all our families who participate!  We look at all your suggestions and see what can be done to enhance each conference agenda. These conferences are for you, so we want you all to be a part of them! 

In March, I was able to participate in the American Society of Human Genetics meeting. It was a very exciting meeting— my brain is still buzzing from all the information that was presented during the sessions!  What was confirmed during these meetings, is that our Foundation has really helped to get the word about Joubert Syndrome out there and to increase awareness in the physician community.  This has been one of our goals for the Foundation.  We all know how important it is to get a diagnosis as early as possible, which leads to getting services started sooner for our children.   

Our Foundation is celebrating its 15th year!  We want to hear from you regarding how you think we are doing, and what we can do better.  Included in this issue of The Rainbow is an Evaluation form.  Please take a few minutes to fill it out and mail it to Alison Ender.  Ali’s address is included on the form.  Thank you in advance for your comments and suggestions! 

Well, that’s about all for now.  I’m hoping to have more conference information available in the next newsletter.  

Your friend and president,
Cheryl Duquette

If you have any questions, please feel free to contact Cheryl via email or by phone 410-997-8084.

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