In 2017, Koolen-de Vries Syndrome Foundation (KdVSF) presented the first ever Koolen-de Vries Syndrome Patient Advocacy Summit. We are pleased to join forces with hosts Mandy and Aaron Bylund to present the 2019 KdVS Patient Advocacy Summit (“Summit”) in Park City, Utah on June 27-29, 2019. Our Events committee is hard at work planning an amazing event.
Agenda is tentative and subject to change.
If you are in town we will plan some activities around Park City. Or you can plan your own day exploring Park City and the surrounding country.
The doctors will have a private meeting with geneticists at Primary Children's Hospital.
Breakfast casserole, Oatmeal, scrambled eggs, fruit, muffins, cereal, sausage, juice, milk & bagles.
All activities donated by the NAC, learn more about their amazing organization here: https://www.discovernac.org/ *Private lodging rooms on the NAC campus will be provided for individuals who need a sensory break or a nap during the day.
It's a 15 minute drive to the NAC from the hotel, but you will need to allow for more time if you are using public transportation. The NAC is currently doing construction on their parking lot, which limits available parking spaces. They have requested that we carpool as much as possible.
All KdVS individuals & family members can take part in adapted activities such as a high ropes course, archery, rock climbing, cycling, mountain biking, team building, equestrian assisted learning, etc. All of these activities are possible thanks to a generous donation from the National Ability Center!
Boxed lunches generously donated by Kneaders bakery. Come grab your lunch any time during lunch hours under the sun shelter ramada.
Dinner and the fiesta party are generously donated by KdVS individual Sam Ghavimi. The fiesta includes Mexican food from Cafe Rio, dancing, piñatas, and fun for everyone! If you see Sam give him a high-5 for providing this amazing night!
Continental Breakfast- Oatmeal, scrambled eggs, fruit, muffins, toast, cereal, sausage, apple juice & milk.
All lectures and childcare will be held at 2555 Kilby Rd., Park City UT. It's about an 8 minute drive. Plan for more time if using public transportation. Please arrive with enough time to get your child settled into childcare before lectures begin at 8:30.
Childcare will be provided at the church and children will be separated into small groups by age. Age appropriate snacks, crafts, toys, games, and movies will be provided for all groups.
Mrs. Moise will be holding a workshop for parents to understand challenges and needs of siblings of special needs children. She will also be discussing the specific concerns expressed by KdVS siblings from the Thursday workshop the day before.
Pizza provided by Papa John's Pizza.
This is the night to let our Kool Kids shine!
Socialize, explore Park City, or hang out at the pool with other families!
Biscuits & Gravy, Oatmeal, cereal, muffins, toast, fruit, apple juice, orange juice, milk
Doctors introduced with assistance from a KdVS Teen or Adult. Childcare provided in adjacent room
The address of the Utah Olympic Park is 3419 Olympic Parkway, Park City. It is a 6 minute drive. Please allow more time for travel if using public transportation.
Watch a show of Athletes from both the olympic and the US freestyle ski teams doing aerial jumps at the Utah Olympic Park while enjoying lunch donated by Pauni Island Grill! Box lunches will be served at the lecture venue and can be taken to the Utah Olympic Park.
The carnival will include a splash pad, bounce houses, face painting, carnival games, Sam’s Dance Party, a live DJ, crafts, prizes, balloon animals, cotton candy & snow cone machines, lots of yummy food, etc! Most items have been generously donated by friends and family of Utah KdVS families.
Sunday isn't an official day of the Summit so we aren't buying breakfast food this day. We will serve any unused breakfast food from earlier in the week. Take your chances eating whatever breakfast food we have, or check out one the amazing breakfast restaurants in Park City!
If you are going to the Mormon Tabernacle Choir performance you must be seated by 9:15AM. The drive from Newpark is about 30 minutes. Please allow extra time for travel if you are using public transportation.
Drive down the canyon into Salt Lake City to see a performance by the Mormon Tabernacle Choir, take a tour of Temple Square, enjoy a picnic at City Creek Park. Because the performance will be broadcast on live TV, children under the age of 8 will need to view the concert from an adjacent room to minimize audience noise. The Utah KdVS parents & family members are happy to watch your children if you want to see the performance in the main hall.
1. Register all members of your party
2. Reserve your hotel
3. Plan your travel arrangements (airline, rental car, etc)
4. Get really excited!
Goals of the KdVS Summit:
Goal 1: Provide families with the latest research and expert knowledge of KdVS, including medical, education and developmental implications. This knowledge can be life changing and even life saving for the families and patients.
Park City is a gorgeous city so consider coming a few days early or staying a few days late to complete your family vacation. To help make your stay as affordable as possible, we are working hard to provide as many meals as possible for all attendees during the three days of the Summit.
We hope you can join us!
Goal 2: Bring doctors, specialists and researchers together with KdVS families to gather tangible data, further research, and assess needs.
Goal 3: Allow families to socialize and network within a supportive environment.
Dr. de Vries will be presenting...
Dr. de Vries will be presenting “Getting to the Koolen-deVries syndrome: the history (and a bit of the future).”
Dr. Koolen will be presenting...
Dr. Koolen will be presenting “What is there to know about KdVs?”.
Dr. Myers will be presenting...
Dr. Myers will be presenting on “Seizures in People with KdVS”. Topics will include the usual range of age of onset of seizures, typical seizure types, medications that tend to be effective, and the likelihood of growing out of seizures.
Dr. Kasri will be presenting...
Dr. Nael Nadif Kasri will be presenting…
Dr. Johnston will be preseting...
Dr. Susan Johnston, PhD, is an Associate Professor in the Department of Special Education at the University of Utah and serves as an Associate Dean in the College of Education where she coordinates academic and student affairs. Susan’s research and scholarly interests include augmentative and alternative communication, early language and literacy intervention, and early childhood special education. She has published articles and has delivered state, national, and international presentations in these areas. Susan has been with the University of Utah since 1997. She received her MA and Ph.D. in Speech-Language Pathology from the University of Minnesota in Minneapolis, MN. Prior to coming to Utah, Dr. Johnston was an Assistant Professor in the Department of Special Education at Eastern Michigan University in Ypsilanti, MI.
Mrs. Moise will be presenting...
Bea Moise will be presenting….
Beatrice (Bea) Moise, M.S., BCCS., is a Board Certified Cognitive Specialist. She is the creator of A Child Like Mine,LLC , a company created for educating parents of children with unique behavioral and learning needs, while giving them the tools they need to be successful at home. She is a respected and trusted parenting coach and consultant at Southeast Psych in Charlotte, NC. She serves as a Board of Trustee Member at Palisades Episcopal School and The Lunch Project. She is a writer for PsychBytes and ShrinkTank, and her writing has also been featured in Autism Parenting Magazine, Charlotte Parent, Carolina Parent. Beatrice is contributor author inSoutheast Psych’s Guide for Imperfect Parents: A Book Written By Imperfect Therapists. She was featured in a documentary called Look to the Sky an inspiring documentary that takes a look at what is possible for the world and our own lives.
Bea has worked as a Parenting and Behavioral Consultant for years with extensive experience working with parents of children who have a variety of diagnoses such as Autism Spectrum Disorders, Anxiety Disorder, Conduct Disorder, Oppositional Defiant Disorder, & ADHD. She has trained hundreds of families on Parent Management Training. She has provided parents with tools that are useful. Providing parents with practical techniques and teaching strategies.
She has a Bachelor of Science in Psychology, and also holds a Master of Science in Mental Health Counseling with a specialty of Applied Behavior Analysis from Nova Southeastern University. She is a member of American Psychological Association & North Carolina Association for Behavior Analysis. Beatrice and her husband, Rubin Moise, have 2 children, Jacob who is awesomely autistic & Abigail who is simply marvelous.
The estimated cost for the 2019 KdVS Patient Advocacy Summit is $60,000. We plan to raise this money through sponsorships, donations and grants. Every donation is extremely helpful, no matter the size. There are numerous levels of sponsorship available as well as donation of funds for specific items such as sponsoring a meal, a speaker or a conference room.
If you would like to help us get donations for the event, you can download the sponsorship packet. You can also reach out to Mandy Bylund if you’d like more information about how to help raise funds for the summit.
Email Mandy at: email@example.com
All conference sessions and childcare will be held at the host hotel, Newpark Resort
By Phone: call 435-649-3600, extension 2, and reference group by name KDVS Summit 0619. The group confirmation number is 270590.
OR follow the direct group booking link: https://gc.synxis.com/rez.aspx?hotel=67229&chain=15564&promo=KDVS2019&arrive=6/24/19
*Note: reservations which include dates that fall outside of the groups event dates, will not be able to book online and should call for assistance booking
Room block expires May 27th, 2019
Flights should be booked to the Salt Lake City International Airport. Newpark Resort is a 35 min drive from there. (If you live in a city with Allegiant Airlines, the Provo Airport is a 50 min drive to the hotel, but tickets would likely be significantly cheaper)
For local transit, Park City offers a free public bus system. Check out http://www.parkcity.org/about-us/transit-bus/ for maps, schedules, and more information.
For private transit and airport shuttles, the resort recommends Park City Direct. Contact them at 435-655-3010 to schedule a ride. Uber and Lyft are also reliable options and would likely cost significantly less.
You may know Park City as a world-class ski town, or the home of the Sundance Film Festival. But what you may not know is that Park City is an incredible place to visit in the summer time!
Surrounded by beautiful mountains, rivers and lakes, Park city offers incredible outdoor activities and amazing views. And Park City also features a thriving historical district, creative community and active culture.
If you want to extend your trip in Park City, there is an endless list of things you can do and there will be lots of Kool families to do it with! Hover over or click on the images below to get more ideas!
Every Sunday in the summer on Main Street enjoy the Park Silly Market. An open air market & street festival with local artwork, food, drinks, live music, street performers, a farmers market and much more!
Please fill out the registration form, then purchase tickets below!
If you are willing we would love to add your picture to the photo directory! We will mail out a printed directory with everyone’s names and photos to help everyone get to know each other!