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.
1. Register all members of your party
2. Reserve your hotel
3. Plan your travel arrangements (airline, rental car, etc)
Goals of the KdVS Summit:
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 “Getting to the Koolen-deVries syndrome: the history (and a bit of the future).”
Dr. Koolen will be presenting “What is there to know about KdVs?”.
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.
Prof. Angela Morgan will be presenting on….
Dr. Nael Nadif Kasri will be presenting…
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.
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: mandy@kdvsfoundation.org
Click Below to Download
All conference sessions and childcare will be held at the host hotel, Newpark Resort
Booking Information:
By Phone: call 435-649-3600, extension 2, and reference group by name KDVS Summit 0619. The group confirmation number is 270590.
Online:
Visit www.newparkresort.com
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
Travel Information:
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!
Explore hundreds of miles of biking trails or take the ski lifts up and ride down the slopes.
Go on a horseback riding trip in the beautiful Park City mountains.
Visit nearby Provo River for some of the best fly fishing in the country and picturesque Provo Canyon.
Explore hundreds of hiking trails in the Park City area.
Reach speeds over 30 MPH in the coaster, or try one of two alpine slides in the area.
Shoot down the long jump runs at Utah Olympic Park at speeds up to 50 MPH.
Try one of the multiple zip line options in Park City or travel 20 minutes south to the ziplines at Sundance Resort.
Reach speeds up to 60 MPH on a real bobsled track!
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!
Most nights you can find free outdoor concerts in Park City.
The famous graffiti artist, Banksy, left his mark on the town three times. Go see them all!
Shop 100 retailers with amazing prices less than 2 miles from NewPark Resort!
Take a stroll down historic Main Street and jump on a free trolley ride.
Enjoy window shopping in historic downtown Park City and see the location of the Sundance Film Festival.
Rent electric bikes on NewPark property, and other locations. $2.00 for 45 minutes.
There are plenty of ski lifts that run all summer to let you see the beautiful mountains and the city below.
Explore Olympic History, watch olympic athletes train and experience a few olympic sports yourself!
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!
$20.00 – $25.00
Shirts will NOT be shipped! They must be picked up at the event.
NOTE: All KdVS individuals get a free shirt. Don’t order one for them here!
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