Hope Shines Bright - 2017

The JSRDF Family and Scientific Conference is headed to the west in July of 2017!  Hope Shines Bright in Phoenix, Arizona!  We hope you’ll join us, please see below for details.

Register for the Conference

Information Needed to Register

  • Names & Cell Phone numbers for all applicable attendees.  This will be used for communications during conference week.
  • Family Photo for the conference binder.  While this is optional we highly recommend submitting a photo for the binder.  This helps families make connections with other attendees.
  • Tee shirt sizes for all attendees.
  • Payment (Paypal, credit card or check accepted)
  • Everyone, including caregivers, must be registered for the conference. The only exception is a caregiver who is caring for an individual outside of the conference space, no meals will be provided for caregivers that have not registered.


  • Registration deadline is June 15, 2017
  • LATE Registrations will be accepted until July 1, 2017. Late registrants will not receive a conference tee shirt and childcare will not be available.
  • Late registrations will incur a $70 late fee.
  • NO Registrations will be accepted after July 1, 2017.
  • If you have applied for a scholarship, please wait to register until you have received communication from the Scholarship Team.

REMINDER: Scholarship Application Deadline is January 31, 2017!


  • For special room requests (adjoining rooms, accessible rooms, etc), please contact the Scottsdale Resort at McCormick Ranch directly at (480) 991-9000.
  • The hotel block is for registered attendees only. We reserve the right to cancel any room reservation that does not have a paid conference registration on July 1, 2017.
  • By booking in the JSRDF room block, the “Resort Fee” has been waived.  Your confirmation will  state that there is a $29 Resort Fee; this fee has been waived for our group.


Link to Register for The Treehouse

Deadline to register is June 14.  Sorry, no late registrations will be accepted due to staffing requirements.

*For you to get the most out of each presentation, we do not suggest having children in the daily sessions.  Please utilize the Children’s Activites or Treehouse (professional childcare) options.*

  • The Treehouse is our JS conference childcare (younger kids) and camp (older kids) run by ACCENT on Childcare Arrangements, a professional conference childcare company.  Their specially trained, professional supervisors are CPR and Pediatric First Aid certified. Staff includes teachers, professional child care providers and mothers who simply love working with children and have completed ACCENT’s specialized training program.
  • Because there is a cost to the JSRDF to provide this amazing service, we ask that you register only if you are certain you are using their services.  Any family who registers and does not show up may be charged $100 per child.
  • For liability reasons, parents (or other designated individuals over 18) will check kids in an out.  NO caregivers, siblings or anyone else not registered as a Treehouse attendee may use the childcare facilities and activities.


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Date & Time

The conference will start Wednesday July 19th around 2:00 pm and wrap up with a closing dinner and dance Saturday, July 22nd.

Conference Schedule

This is sure to be the best conference yet!  We will have medical and research updates by the worlds leading Joubert Syndrome researchers and talks and workshops to help you in your everyday lives.  We’ll continue to celebrate this extended family reunion with a Mom’s Night, Dad’s Night, Grandparent Get Together and more!

New for 2017: A workshop focusing on behavior, a FULL schedule of activities for affected individuals siblings, and teens/young adults, plus SO much more.

Please see the attached tentative preview of the 2017 agenda. Schedule Preview


Want to see what the 2015 Conference looked like?  Click the link below to view the schedule from 2015.

2015 CHICAGO Brochure


Registration Fees

The registration fee includes all conference meals (Weds: Dinner, Thursday: Breakfast, Lunch and Dinner, Friday: Breakfast and Lunch, Saturday: Breakfast, Lunch and Dinner.)   It also includes any and all speakers, workshops and offerings listed on the agenda.

New for 2017:  (added Thursday dinner and Saturday lunch).

Adults 13+: $199

Children 4-12: $150

Children 3 and under: $25

Individuals with a Joubert Syndrome Diagnosis: FREE!

The Rooms

There will be 2 types of rooms in the block.

  • McCormick Double Queens and Kings – $99 plus tax
  • Stillman Suites (one king bed suite with pull out sofa) –  $199 plus tax

With our block we have negotiated:  NO resort fee ($25 value), FREE valet parking, FREE WIFI and early check in.

*Rooms booked outside this block will not be guaranteed the room rates or amenities listed above.

Rooms in the block are reserved for conference attendees who have paid registration.

The Hotel

The conference will be held at the Scottsdale Resort at McCormick Ranch (7700 E McCormick Parkway, Scottsdale, AZ) which just completed a multi-million dollar renovation. The grounds are very accessible and there is a lovely pool area for evening relaxing, plus many shaded and air conditioned spaces.

The following is a map of the resort grounds:  Resort Map


Where should my child be?

Please refer to the link below for information on options for where your child can be based on age and ability.

*For you to get the most out of each presentation, we do not suggest having children in the daily sessions.  Please utilize the Children’s Activites or Treehouse (professional childcare) options.*

Where should my child be?

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Scholarship Program

Once again, needs based financial assistance will be offered for families to be able to attend the conference.   The process favors first time attendees.   We encourage families to hold private fundraisers, as these are partial scholarships.  Many families have had success with social media campaigns, garage sales, bake sales, etc.

Please know that there are restrictions on how the JSRDF Logo can be used and contact JSRDF President, Eric Swenson at with any questions.

DEADLINE:  Applications are due January 31, 2017 at midnight – NO EXCEPTIONS

Scholarship Deadline is passed.

For families seeking financial support to attend conference; one source for potential support is contacting your local Developmental Disability Council. There are Developmental Disability (DD) Planning Councils that serve each state and territory in the U.S. and under the umbrella of “Family Support Services”.  To see if family support funds might be available in local regions through the DD council, visit

Other ideas:  Check with local organizations such as Lions, Rotary and Kiwanis.  As your doctors, social workers, clinics and therapists if they can put you in touch with any organizations that provide financial assistance to attend conferences with consultation opportunities.  In some states; the Arc offers financial assistance to attend conferences.

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Frequently Asked Questions

I am bringing a caregiver to help with my kids who isn’t going to eat or attend sessions; do I need to register them? 

Yes, all attendees need to register so we can allocate the proper space.

Am I required to stay at the conference hotel?

No, but we HIGHLY recommended it.  Many attendees have great memories revolving around “down time” and staying at the hotel makes families feel more included.  Plus we have negotiated a nice package making it cost effective and easy for families.

Tell me about the childcare?

ACCENT on Children’s Arrangements, Inc. is a national company with staff trained to provide convention, conference child care.  We will supervise and entertain children with age-appropriate, curriculum-enriched environments containing many hands-on creative activities. ACCENT’s talented staff produces stimulating children’s programs on-site with scrupulous attention to children’s health and safety needs. Our specially trained, professional supervisors are CPR and Pediatric First Aid certified. ACCENT’s on-site staff includes teachers, professional child care providers and mothers who simply love working with children and have completed ACCENT’s specialized training program.

ACCENT employees’ references have been thoroughly checked. ACCENT’s goal is to produce positive and lasting memories for the children attending the Camp by adhering to high standards of quality and building educational curriculums to engage the children.

**Check Details section for more information about options for kids.

What is the dress code? 

During sessions, families tend to be very comfortable and casual.  Some do tend to get a bit dressed up for the Closing Dinner and Dance on Saturday night.  Most important is to bring your dancing shoes!

Will the conference rooms be air conditioned?

Yes.  Please know that your conference chairs took this into consideration when choosing the host property and are taking additional steps to aide in temperature management throughout the conference week.   With air-conditioned hallways for most guest rooms and shaded walkways to sessions, attendees will be comfortable.

Do I need to rent a car?

There is no FREE shuttle.  There are shuttle options from the airport, all meals except Friday dinner are included in your registration and there is a Walgreens 2 blocks away for last minute items so a car is not required.  That being said, it’s a personal choice and many families rent one anyway.

Parking/ Trasportation at Sky Harbor Airport

What is Mom’s Night?

Mom’s night is new to this conference and we’re really excited about it!  This will be held Thursday evening and is for moms of individuals with Joubert Syndrome.  A secluded suite has been reserved for the moms to get together and get away for a couple of hours.

What is Dad’s Night?

Dad’s night is a returning event for our Phoenix conference.  In past conferences, dad’s night has been a huge hit!  Our special dads just getting together to hang out and relax.


What are Sib Shops?

The JSRD has some of the most incredible siblings!  Each conference our awesome mother/daughter team organizes and executes really great sessions and activities for children attending the conference that have a brother or sister with Joubert Syndrome.  This is a safe place, away from parents and their affected sibling, for kids to share their feelings about what it’s like to have a sibling with special needs and to connect with other siblings that share a similar situation.

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Family Giving Tree

We are excited to announce the introduction of the Family Giving Tree!  Families wishing to honor or memorialize their loved one with Joubert Syndrome can do so in one of the three tiers listed below.  Individuals will be recognized at the conference on the Giving Tree Wall as well as featured in the conference booklet.

FAITH – $5000 +

HOPE – $1000 – $4999

LOVE – $100 – $999

For more information on how to include your loved one on the Family Giving Tree, please contact Denise Mack at

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Still Have Questions?

If you still have questions; please contact one of your conference co-chairs (Jenni Swenson, Jackie Olson, Denise Mack and Laura Soder) at


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