Sneak Peek at the 2017 JSRDF Conference! - Joubert Syndrome & Related Disorders Foundation
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The 2017 Joubert Syndrome & Related Disorders Foundation Family and Medical Conference is fast approaching! It’s happening July 19th-22nd in beautiful Phoenix, Arizona. Conference co-chair Jenni Swenson offers us a peek into some of the wonderful activities and agenda items in store for participants. 

JSRDF2017 Conference Logo

As we approach these last few weeks leading up to the 2017 JSRDF Conference, I sit here filled with a variety of emotions.  I am beyond excited about the number of families that will be in attendance for the first time at this conference!  Jackie, Denise, Laura and I, as co-chairs, pride ourselves on ensuring that the conferences, no matter how large they get, continue to feel like a giant family reunion. We cannot wait to welcome you as you arrive! I am anxious about the number of attendees expected and exhausted just thinking about the late nights and early mornings! Most of all, I am thankful.  Thankful to have been a part of planning the past three conferences. Thankful for the resources that we have to provide an unforgettable conference for families. Thankful for the generous donors that make it possible for us to continue to grow the conference every two years. And, thankful to have been surrounded by such incredible people in planning and attending the conferences.

We have so many great things planned for this conference! Phoenix has provided some really incredible organizations, Raising Special Kids and Ability 360. Raising Special Kids is an Arizona local non-profit organization that provides support and information to parents of children, ages birth to 26, with a full range of disabilities and specialty health care needs.  You can read more about the services that they offer at the link here: Raising Special Kids.

In our planning stages, the co-chairs and I had the opportunity to visit the Ability 360 campus in AZ. We were all in awe of what the facility offers to individuals with special needs. If you have some down time while you’re in Phoenix, I would highly recommend checking out this campus.  If not, you can check it out here: Ability 360 Campus.  Darrell Christianson of Ability 360 will join us on Thursday at the conference for a couple of sessions and we are excited to have him. Darrell is captivating in his talks and has a really empowering and encouraging message to deliver.

We are also really excited to be able to offer sessions on Hippotherapy, the Anat Baniel Method, Cranial Sacral Therapy, Stress Management, and much more. This conference is breaking records not only in general attendance numbers, but the number of grandparents that are attending is much higher than any past conferences.  For the first time ever, we’ll also be offering a full schedule for our individuals affected by JS as well as siblings!  Melissa Fields and her Mom, Kim Walton have put together a really fun schedule for the sibling group to keep them busy all week!

In addition to all of the non-medical sessions that will be offered, we are happy to be welcoming back the team of researchers from the University of Washington, Dr. John Sayer of Newcastle University, as well as the team from the National Institutes of Health.  Many of you have experienced the dreaded appointment when the physician that you’re seeing isn’t familiar with Joubert Syndrome, let alone how to treat it. These researchers are excited about Joubert Syndrome and have a passion for learning more about our kids!

My hope for each of you that will be attending this conferences is that you will try to soak up every minute! Attend as many sessions as you can. Stay up late and talk to as many other families as possible.  The four days go by really fast and before you know it we all have to go back to real life.  Know that it’s okay to feel overwhelmed, emotional and exhausted! Most of all, I hope that you leave Phoenix knowing and feeling that you are not in this journey with Joubert Syndrome alone.

Will we see you at #JSRDF2017? Registration for this event closes in just over two weeks! It’s not too late to join the fun by registering here. For more information visit

  I’ve been really excited since getting back from the Joubert Syndrome and Related Disorders Foundation board retreat in Kansas City. Excited … and just a…