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.
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.
Below is the agenda; please note that changes can still happen and we ask that families be flexible throughout the week. *Click on each image to view a clear page of the agenda.
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!
There will be 2 types of rooms in the block.
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 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
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.*
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 firstname.lastname@example.org 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 http://www.nasddds.org/state-agencies/
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. www.thearc.org
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.
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.
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 email@example.com.
If you still have questions; please contact one of your conference co-chairs (Jenni Swenson, Jackie Olson, Denise Mack and Laura Soder) at firstname.lastname@example.org.