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2019 KdVS Patient Advocacy Summit

June 27, 2019 - June 29, 2019

Free – $50
KdVS 2019 Summit Event Page Cover Photo

Summit Countdown

What is the KdVS Patient Advocacy Summit?

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.


All Day - Optional Activities

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.


8 AM - Doctors meeting at Primary Children’s Hospital

The doctors will have a private meeting with geneticists at Primary Children's Hospital.

6AM - 9AM - Registration & Breakfast- in the conference room and sky bridge lounge

Breakfast casserole, Oatmeal, scrambled eggs, fruit, muffins, cereal, sausage, juice, milk & bagles.

9AM - 6PM - A Day at the National Ability Center

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.

9AM - 9:45AM Welcome & Opening Remarks with NAC team at hotel

9:45AM - 10AM Leave hotel and travel to NAC

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.

10AM - 4:30PM Activities at NAC:

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!

11:30 AM - 1:00PM Kneader's Bakery boxed lunches

Boxed lunches generously donated by Kneaders bakery. Come grab your lunch any time during lunch hours under the sun shelter ramada.

4:30 PM - 5:00PM Travel back to hotel

5PM - 8PM Sam Ghavimi's Fiesta Dinner Party

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!


6AM - 9AM - Breakfast in the conference room and sky bridge lounge

Continental Breakfast- Oatmeal, scrambled eggs, fruit, muffins, toast, cereal, sausage, apple juice & milk.

8:00 AM - Travel to church building

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.

8:30AM - 12:30PM Presentations from Doctors (introduced by a KdVS Teen or Adult)

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.

8:30AM - 9:30AM Bea Moise: The Sibling's Perspective

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.

9:30AM - 10AM Dr. de Vries: Getting to the Koolen-deVries syndrome: the history and a bit of the future.

10:00AM - 10:45AM Dr. Susan Johnson & Dr. Betsy Kanarowski: Sexual Abuse of Young Children with Disabilities: Prevalence, Prevention, and Intervention.

11:00AM - 12:00PM Dr. Angela Morgan: Communication and feeding development in children with Koolen de Vries Syndrome.

12PM - 12:20PM Anouk Verboven: A new approach to identify candidate drugs for Koolen-de Vries syndrome.

12:20PM - 12:30PM Q&A

12:30PM - 2:00PM Lunch

Pizza provided by Papa John's Pizza.

1:30PM - 3PM Free time/Nap time

5PM - 7PM Dinner, Kool Kid Panel Discussion:

This is the night to let our Kool Kids shine!

7PM - Bedtime Free Time

Socialize, explore Park City, or hang out at the pool with other families!


6AM - 9AM Breakfast in the conference room and sky bridge lounge

Biscuits & Gravy, Oatmeal, cereal, muffins, toast, fruit, apple juice, orange juice, milk

8:30AM - 11:45AM Presentations from Doctors

Doctors introduced with assistance from a KdVS Teen or Adult. Childcare provided in adjacent room

8:30AM - 9:00AM Dr. Koolen: The Clinical Spectrum of KdVS

9:00AM - 9:30AM Dr. Nael Nadif Kasri: How we can use stem cells to better understand KdVS and other neurodevelopmental disorders.

9:30AM - 10:15AM Dr. Ken Meyer: Seizures in Koolen-de Vries Syndrome

10:15AM - 10:35AM Katrin Linda: Cellular and Molecular Mechanisms underlying KdVS

10:35AM - 10:45AM Break

10:45AM - 11:15AM Q&A with Doctors

11:15AM - 12:00PM Panel of Parents with adult & teen KdVS individuals

12:15PM Travel to Utah Olympic Park

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.

12:30PM - 2PM Olympic Park Aerial Ski Jumping Show & Lunch

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.

2PM - 3PM Free time/Nap time

3PM - 7PM Carnival & Dinner

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.


6AM - 9AM Breakfast in the conference room and sky bridge lounge

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!

8:15AM Travel to SLC

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.

9AM - 2PM Mormon Tabernacle Choir & SLC Tour

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.

Don’t forget to:

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. Bert de Vries

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. David Koolen

Dr. Koolen will be presenting...


Dr. Koolen will be presenting “What is there to know about KdVs?”.

Dr. Ken Myers

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.

Prof. Angela Morgan

Prof. Morgan will be presenting...


Prof. Angela Morgan will be presenting on….

Dr. Nael Nadif Kasri

Dr. Kasri will be presenting...


Dr. Nael Nadif Kasri will be presenting…

Dr. Susan Johnston

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.

Bea Moise

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.

Our Sponsors

Diamond Sponsor

Platinum Sponsor

Gold Sponsor


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

Plan Your Trip

All conference sessions and childcare will be held at the host hotel, Newpark Resort

  • Standard Room – $119.00 USD/Night
  • Luxury Suite – $195.00 USD/Night
  • 2 Bedroom Suite – $279.00 USD/Night
  • Townhouse – $229.00 USD/Night (the furthest townhouses are about a 5 minute walk to the hotel)


Booking Information:

By Phone: call 435-649-3600, extension 2, and reference group by name KDVS Summit 0619. The group confirmation number is 270590.



Visit www.newparkresort.com

  • Click the blue BOOK NOW button in the top right corner of the webpage
  • Enter your desired stay dates
  • In the dropdown under the CORPORATE/PROMO field enter the following code: KDVS2019
  • Click BOOK NOW and continue


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.

About Park City

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!

Outdoor Sports

Mountain Biking

Mountain Biking

Explore hundreds of miles of biking trails or take the ski lifts up and ride down the slopes.

Horseback Riding

Horseback Riding

Go on a horseback riding trip in the beautiful Park City mountains.

Fly Fishing

Fly Fishing

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.

Extreme Fun

Alpine Coaster

Alpine Coaster

Reach speeds over 30 MPH in the coaster, or try one of two alpine slides in the area.

Extreme Tubing

Extreme Tubing

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.

Summer Bobsled

Summer Bobsled

Reach speeds up to 60 MPH on a real bobsled track!

Around Town

Park Silly Sunday Market

Park Silly Sunday Market

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.

Spot the Banksys

Spot the Banksys

The famous graffiti artist, Banksy, left his mark on the town three times. Go see them all!

Shopping & Fun

Tanger Outlets

Tanger Outlets

Shop 100 retailers with amazing prices less than 2 miles from NewPark Resort!

Park City Trolley

Park City Trolley

Take a stroll down historic Main Street and jump on a free trolley ride.

Main Street

Main Street

Enjoy window shopping in historic downtown Park City and see the location of the Sundance Film Festival.

Electric Rental Bikes

Electric Rental Bikes

Rent electric bikes on NewPark property, and other locations. $2.00 for 45 minutes.

Ski Lifts

Ski Lifts

There are plenty of ski lifts that run all summer to let you see the beautiful mountains and the city below. 

Utah Olympic Park

Utah Olympic Park

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!

    Summit Shirt


    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!

    SKU: 6733-3-ORDER-SUMMIT-SHIRTS Category:

    Additional information



    June 27, 2019
    June 29, 2019
    Free – $50


    Koolen-de Vries Syndrome Foundation


    Newpark Resort, Park City, Utah
    1476 Newpark Boulevard
    Park City, UT 84098 United States
    + Google Map