Upcoming Events

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.

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

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

Past Events

2018 KdVS Social Gathering


Koolen-de Vries Syndrome 2018 Social Gathering

Mark your calendars and save the date! Planning for a social gathering is underway in Omaha, Nebraska from Thursday, July 12 to Saturday, July 14. This event is being hosted and planned by several KdVS families.

Courtesy hotel room blocks have been secured at two places: Homewood Suites and Hampton Inn and Suites, both located in Downtown Omaha adjacent to each other on Cuming Street, from Wednesday, July 11 to Sunday, July 15. Rooms range in price from $109/night to $124/night (plus taxes). Book your room(s) now to secure the amazing room rate. There are a limited amount of rooms available at the discounted rate on a first-come first-serve basis.

Social events will kick off Thursday night with a kid-friendly cocktail event at Hot Shops Art Center, a facility that’s home to over 80 studio artists. This venue is located across the street from the recommended hotels.

Friday’s itinerary includes a day at Omaha’s Henry Doorly Zoo and Aquarium. We have complimentary admission tickets for up to 300 people thanks to a generous donation from the KDVS Foundation. A private auditorium at the zoo will be available from 9am to 5pm for our group!

Saturday there will be a carnival for all the families. More details to be announced soon.

There is a private Facebook group called “2018 KDVS Social Gathering”. Please request to join this group to stay up-to- date on all the details! Hotel details can be found within the Facebook group or by emailing Nicholle.

Are you planning to attend? Sign up HERE!

Event T-shirts have been ordered and can be picked up at the Event!

Questions? Contact Nicholle Reisdorff at nicholle.reisdorff@gmail.com

This event is sponsored by HATCX!

2017 – Patient Advocacy Summit – Memphis, Tennessee

Memphis, Tennessee July 13 – 15, 2017
The planning for the 2017 Koolen-de Vries Syndrome Patient Advocacy Summit is underway. The event will take place on July 13-15, 2017 in Memphis, TN. The event’s goal is for patients, caregivers and advocates to walk away equipped with information, ideas and goals to help form an action plan for the future. Participate in lectures, Q&A’s, open discussions to learn valuable information and enjoy fun activities bonding with other KdVS families. We have many doctors already prepared to attend this event either as a speaker or as part of our Q&A event. Dr. Koolen and Dr. de Vries are both planning to attend. Please join the Facebook page and we will post updates for this event as they are available.

2016 – July 7-9, Columbus, Ohio

The 2016 Koolen-de Vries Syndrome Gathering will be held in Columbus, Ohio, July 7-9. The gathering will be predominately a social event with lots of time for networking and visiting with other KdVS families.

To assist us with planning, we are asking families to register at EventBrite. If your plans change, your registration can be cancelled at any time.

For details about the event, please join the closed Facebook page by clicking here.

2015 – July 9-11, Asheville, North Carolina

A USA KDVS gathering was held July 11, 2015 in Asheville, North Carolina. Many families arrived a few days early to attend additional fun activities. Ted and Stephanie Needham hosted the gathering and it was clear that they spent a lot of time fundraising and planning to host a huge number of families. Around 65 individuals with KDVS and their families and extended families came together for fellowship, forging new friendships, sharing information, and meeting a number of doctors and specialists. Everyone was honored to have Dr. Koolen and Dr. de Vries travel from the Netherlands to spend a number of days visiting, answering questions and taking lots of pictures!
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2014 – July 24-26, Dallas, Texas

The 2014 Annual KDVS Gathering was held on July 26th and was a great success! A total of 33 Kool Kids and their families made the trip to join their extended KDVS family in Dallas, TX.

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2013 – Indianapolis, Indiana

On August 10, 2013, Indiana was our Gathering place for all KDVS/C17 Families. We hosted events starting on Wednesday prior to the 10th and continued through the following Tuesday.

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