2019 Patient Advocacy Summit

KdVS Foundation is excited to announce that our 2019 KdVS Patient Advocacy Summit will be held in beautiful PARK CITY, UTAH, JUNE 27TH-29TH at the Newpark Resort! Our wonderful host family is doing an amazing job working on extensive plans for the event!

This year we’re expanding the conference to include two extra (but optional) days! They will take place on the 26th and 30th and will include social activities, mountain excursions, picnics and tours for the those who want more time to socialize and explore all that Park City has to offer with other Kool families! For 3 days we will learn, advance research, and socialize with other KdVS families.


During all lectures and discussions, child care will be provided free of charge for all children and KdVS individuals!

Learn from the experts

• Dr. David Koolen, Netherlands
• Dr. Bert de Vries, Netherlands
• Dr. Ken Myers, Canada – pediatric neurologist studying epilepsy in KdVS
• Dr. Angela Morgan, Australia – expert in speech and language pathology studying communication related to KdVS.
• Potentially others.

Learn from Each Other

• Panel discussion with parents of KdVS teens & adults- Learn from their experiences, successes and failures. Ask all the hard questions and get straight-forward answers.
• Panel discussion with KdVS teens and adults- An opportunity for Kool Teens & Adults share with us what life is like living with KdVS!
• Group discussion for siblings of KdVS individuals run by a psychologist/counselor.
• Breakout groups/discussions- You’ll have a chance to sign up for break-out groups and expert led discussions that interest you!


• The genetics team from Primary Children’s Hospital has offered to host and assist with any research the Doctors want to arrange during the Summit! We’re working to secure research funding and are talking with the doctors to see how we can take advantage of the Summit for research purposes. With such a large group of KdVS individuals in one place it’s a great opportunity to gather data!


• Kool Talent Show- Kool Kids get a chance to show off their skills by preforming or displaying their work! We can’t wait to see them sing, dance, perform martial arts, do a skit with the whole family, give a speech about the things they like to do, etc. Tables will also be provided for you to display your Kool Kid’s art, creations or pictures of their accomplishments.
• Concert and BBQ in the park!
• The National Ability Center- The National Ability Center specializes in making recreation available to people of all abilities! KdVS individuals old enough to attend will have the opportunity to spend half a day there. We haven’t pinned down the schedule yet, but possible activities include rock climbing, canoeing, horseback riding, challenge courses & archery! (We’ll plan something awesome for those of us with kids too young to attend!)
• The Annual Carnival- It’s a tradition to hold a carnival on Saturday at KdVS gatherings! There will be bounce houses, face painting, balloon folders, carnival games, prizes, lots of food and so many Kool people to hang out with!
• Trip to Utah Olympic Park to watch the aerial ski jumpers practice! (The Olympic park is visible from the hotel)
• We’re still working out details and schedules but other possible events include hiking, exploring Provo Canyon & its beautiful waterfalls, picnics, open air trolly rides in downtown Park City, and so much more!


Here is some basic info so you can start planning and saving for your trip!

• 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!)
• Due to June being “off season” for Park City, we’re able to get amazing room rates. The basic room rate is only $119.00/night. There are other options such as a 3 bedroom townhouse for $279/night.
• Because so many KdVS families are helping with fundraising and food donations, we’re able to offer all meals free of charge during the 3 days of the conference! The goal is to offset some of the financial burden and help more families to attend.
• All KdVS individuals are welcome to attend the conference free of charge! The fee for everyone else is $50/person.

Join the conversation!

Future updates and info about the Summit will also be posted in the KdVS Patient Advocacy Summit group.

Register Today!

Information on hotel reservations and Summit registration will be released soon.