Koolen-de Vries Syndrome Foundation | KDVS

KdVS Connect - Navigating Kool Kid Participation
2022-05-22 20:00 (America/Detroit)
Join the Koolen-de Vries Syndrome Foundation for a virtual support group on May 22, 2022 at 8 pm ET. Discussion will revolve around navigating Kool Kid participation with neuro-typical groups in school, sports and making friends. Don’t forget to register!

It Takes a Village - IEPs PreK thru 4th Grade
2022-05-07 14:00 - 15:00
Koolen-de Vries Syndrome Foundation, IDefine and SETBP1 Society are excited to form a partnership called “It Takes a Village”. Through this partnership, our wonderful communities will have the chance to share resources and join informative webinars that apply to our populations.
The first webinar is for families with children in PreK thru 4th grade. Join KdVS Foundation’s Kaci Fisher as she speaks with Kelly Rhyne (IDefine), an expert in Individualized Education Plans (IEP) for young school age children.

Webinar with Dr. Katie Pecheck
2022-04-28 13:00 - 14:00
Join the KdVS Foundation for a conversation with Kool Mom and dentist, Dr. Katie Pecheck. Register and submit your dental questions here.

After registering, you will receive a confirmation email containing information about joining the webinar.

KdVS Connect - Verbal Speech Discussion
2022-04-09 12:00 - 13:00
Join the Koolen-de Vries Syndrome Foundation for a virtual KdVS Connect zoom call. On April 9, 2022 at 12 pm ET, attendees will have the chance to discuss all things related to speech. What works or has worked for your Kool Kid? How has communication changed or improved with age? Don’t forget to register!

KdVS Connect - Young Adults & Parents
2022-03-13 20:00
Join Koolen-de Vries Syndrome Foundation for a virtual Zoom event. March 13, 2022 at 8 pm ET – KdVS young adults and their parents are invited to discuss transitions to adulthood and independent living. Don’t forget to register!

KdVS Connect - Regional Groups
2022-02-12 12:00 - 13:00
Join us for KdVS Connect on February 12, 2022 at 12 pm ET. This month’s theme is connection within your geographic region. Registration link below – make sure you tell us where you are joining our Zoom call from (Europe, Australia/New Zealand, Central/South America, Africa, Asia, or if inside the USA, please specify general region).

Webinar - Speech Tracker Study
2022-02-09 18:00 - 19:00
Join us on February 9th, 2022 at 6 pm ET for a conversation with Prof. Angela Morgan and her PhD student, Olivia Van Reyk! They will be providing updates on their Speech Tracker study that builds on their previous research showing that speech and language is a core developmental challenge for children with Koolen-de Vries Syndrome. The data gathered helps researchers better understand prognosis and aids with developing more targeted speech therapies.
Don’t forget to register!

KdVS Connect - Emotional Support Group
2022-01-16 20:00
Join us on Zoom January 16, 2022 at 8 pm ET for an Emotional support group for KdVS parents/caregivers. What’s been the most difficult part about being a KdVS parent? How do you cope?

Pediatric Ophthalmology Webinar
2021-12-12 11:00 - 12:00
Dr. Daphna Landau is an orbital and oculoplastic surgeon at the Goldschleger Eye Institute, Sheba Medical Center, Israel, and a research affiliate at the division of Ophthalmology, Children’s Hospital of Philadelphia (CHOP). She has an MD degree from Tel Aviv University and a BSc in Mathematics with Computer Science from the Technion – Israel Institute of Technology (cum laude on both). She is a graduate of the Rothschild Scholars Program, the Technion Program for Excellence, and won several prizes and scholarships for academic and clinical excellence. Dr. Landau was trained in oculoplastic surgery at CHOP. She participated in several international humanitarian delegations to tribal areas, performing oculoplastic surgeries. Dr. Landau is an associate editor of Atlas of Orbital Imaging under Springer publications, a collaborative work of world leaders in orbital surgery and imaging, and is leading various academic and innovative projects.
Dr. Sharon Blum Meirovitch completed both her BSc degree in Medical Science and MD degree in Tel Aviv University, Israel (Cum Laude in both). Between 2014-2019 she trained in ophthalmology at the Goldschleger Eye Institute, Sheba Medical Center, Israel, after which she specialized in paediatric opthalmology and strabismus at the Tel Aviv Medical Center, Israel. She is now part of the International Paediatric & Strabismus fellowship program at Moorfields Eye Hospital, London, UK. Dr. Blum Meirovitch won several scholarships for academic excellence and published numerous papers in the peer-reviewed literature.

KdVS Connect - Grandparents Support Group
2021-12-04 12:00 - 13:00
Join us December 4, 2021 at 12:00 pm EST for a KdVS Connect just for all the Kool grandparents! This event is a virtual event, held through Zoom, so don’t forget to register!

KdVS Connect - Epilepsy Discussion and Support
2021-11-20 12:00 - 13:00
Join KdVS Connect’s monthly Zoom call to discuss all things epilepsy! Approximately 50% of individuals diagnosed with Koolen-de Vries Syndrome are also diagnosed with epilepsy. On November 20, 2021 at 12:00 pm EST, parents are invited to share their child’s epilepsy journey and learn from the experiences of other families. Get support, give support!
What is KdVS Connect? KdVS Connect is a free monthly Zoom call to allow Koolen-de Vries Syndrome families to come together virtually, to share their stories and to give and receive support. Each month the discussion topic will change!

KdVS Connect - Emotional Support Group
2021-10-10 20:00 - 21:00
Join us October 10, 2021 at 8 pm EST for KdVS Connect. This month’s zoom call is an Emotional Support Group. Topics to discuss will include: What has been hardest about being a KDVS parent? How do you cope?
What is KdVS Connect? KdVS Connect is a free monthly Zoom call to allow Koolen-de Vries Syndrome families to come together virtually, to share their stories and to give and receive support. Each month the discussion topic will change!

KdVS Connect - Behavioral Challenges
2021-09-19 20:00 - 21:00
Calling all KdVS caregivers! Our zoom topic of the month is “Behavior Challenges, Anxieties, Phobias, and Repetitive Behaviors”. What has been challenging and how have you handled it? Register through the zoom link below to meet with other KdVS caregivers on September 19 from 8-9 pm EDT.
What is KdVS Connect? KdVS Connect is a free monthly Zoom call to allow Koolen-de Vries Syndrome families to come together virtually, to share their stories and to give and receive support. Each month the discussion topic will change!

KdVS Zoom Happy Hour
2021-08-22 20:00 - 21:00
Join us Sunday, August 22, 2021 from 8-9 pm EDT for a virtual happy hour! Register using the link and come ready to visit other families.

Kool Kampaign 2021
2021-07-17 - 2021-09-17
The Koolen-de Vries Syndrome Foundation is proud to sponsor the 2021 Kool Kampaign for Research. 100% of the donations received will be used to fund KdVS research projects. We are using an online peer-to-peer fundraising platform that we are asking families to share with their friends (via email, social media, etc). Money can be raised through a variety of means…just by sharing your fundraising page, but also through small events like lemonade (or maybe kool-aid?!) stands, restaurant give-backs, bake sale, car wash, birthday parties, races, etc. The ideas are limitless!
A huge thank you to Selena Stagner and Gary Nelson, Kool grandparents, for pledging to match every dollar donated up to $50,000!!! All donations received between July 17 – September 17, 2021 will be allocated for research.
Please join our Kool Kampaign facebook page to ask questions, generate ideas, and to cheer the Kampaign on!
Join us in fundraising using the GiveLively platform. Check it out! Need some help setting up your fundraising page? Here are step-by-step instructions!

2021 VIRTUAL KdVS Patient Advocacy Summit
2021-07-14 - 2021-07-16
Click on the registration button above to browse the agenda and speakers and to register!
What is the Patient Advocacy Summit? In 2017, Koolen-de Vries Syndrome Foundation hosted the first KdVS Patient Advocacy Summit in Memphis, TN. The goal of the event was to bring families and doctors together to network, learn and socialize. The Summit, which is held every two years, was held in Park City, Utah in 2019. Due to Covid, in 2021 we are hosting a virtual event!! This event promises to be exciting! Prepare for a KOOL experience with Koolen-de Vries Syndrome Foundation and the exceptional KdVS community. Speakers, live Q&A sessions and networking opportunities are all included in the schedule. Summit Countdown What's next?! Everyone's excited! Everyone has questions! Get answers to the questions below and MORE by downloading our most up-to-date Frequently Asked Questions.

When can I register for the Patient Advocacy Summit?
How much will registration be?
What is the schedule?
Will recordings be available to view?

Join the conversation Continue to check the website for updates over the upcoming months but also join us on Facebook! Connect with others interested in attending, ask questions and get excited!

Webinar with Dr. de Vries
2021-06-25 11:00 - 12:00
Coming up on June 25th at 11am EDT, don’t miss a conversation with Dr. Bert de Vries, clinical geneticist from The Netherlands, and member of the KdVS Foundation Medical Advisory Board. He will be sharing information about the current research into KdVS individuals. Register here:

Family Zoom Meet Up
2021-05-23 17:00 - 18:00
Join us for a virtual meet up of Kool families on May 23rd, 2021 at 5 pm ET.
We had a great time on our first Zoom meeting and families attended from all over the world. Attendees will be divided into smaller break-out rooms to allow easier networking.
We would love to meet you!

Webinar with Dan Morreale
2021-05-13 13:00 - 14:00
On May 13th at 1:00 PM ET, the Koolen-de Vries Syndrome Foundation will be hosting a webinar with Special Education teacher and Kool Dad Dan Morreale. Dan will be discussing Individual Education Plans (IEPs) and planning for a successful school year. If you have a question to ask Dan, you may submit it directly within the webinar registration page or email us at ashley@kdvsfoundation.org. We will answer questions as time allows.
Registration link below!

Webinar with Dr. Koolen
2021-04-30 12:00 - 13:00
On April 30th at 12:00 PM ET, the Koolen-de Vries Syndrome Foundation will be hosting a webinar with Dr. David Koolen. If you have a question to ask Dr. Koolen, you may submit it directly within the webinar registration page or email us at ashley@kdvsfoundation.org. We will answer questions as time allows.
Registration link below!

Webinar with Dr. Ken Myers
2021-02-15 10:00 - 11:00
More details and registration to come.
February 10, 2021 at 10 am EST – join Koolen-de Vries Syndrome’s Kaci Fisher as she and Dr. Ken Myers, pediatric epileptologist, discuss epilepsy and KdVS.

Dr. Angela Morgan Webinar
2020-12-06 18:00 - 19:00
On Sunday, December 6th at 6 pm EST, Koolen-de Vries Syndrome Foundation will be hosting a webinar with Dr. Morgan where she will be sharing information about current research in speech therapy and communication resources for KdVS individuals.
Have a question to ask Dr. Morgan? Submit it directly within the webinar registration page or email us at ashley@kdvsfoundation.org by 12 PM EST on Saturday, December 5. We will answer questions as time allows.
Dr. Angela Morgan leads the Speech and Language group at the Murdoch Children’s Research Institute and is Professor-Director of Speech Pathology at the University of Melbourne.
In recent years, Angela has developed a passion for studying speech and language in children with rare genetic syndromes to optimize clinical outcomes and to improve prognostic counseling for families of affected children.

Family Yoga Fundraiser
2020-10-17 12:00 - 12:45
Charlotte Pop-Up Yoga is hosting a family-friendly yoga event! This 30-minute practice is ideal for families with children ages 4-10, but anyone and everyone will enjoy this fun flow! No yoga experience necessary. At the end we will discuss tips for home practice with kids and registration will include a Kids Yoga Home Sequence PDF and access to our Kids Yoga Playlist!

All proceeds will be donated to the Koolen-de Vries Syndrome Foundation! CPY Co-Owner Christina daughter was diagnosed with Koolen-de Vries Syndrome in 2019.

Registration will close 1hr prior to the event when the Zoom link is emailed out. Get a ticket for your family now HERE!

2020 KdVS Triathlon
2020-10-17 - 2020-11-17
Raise awareness for Koolen-de Vries Syndrome and show your support for all of our hard-working friends living with KdVS!
Join the Cooper Family and Koolen-de Vries Syndrome Foundation in our 2020 “Tri” to be Kool Virtual Triathlon! This is our fifth annual Triathlon and this year all proceeds from the event will benefit KdVS Research projects.
The triathlon can be completed from anywhere around the world between October 17 and November 17. Required distances are uniquely set (1.7 mile swim, 21 mile run, and 31 mile bike) in order to promote awareness of Koolen-de Vries Syndrome (KdVS). Distances can be broken down at your convenience or can be completed at once; you have one month to complete the events! After your purchase, please join the event Facebook Page (Tri to be Kool: Virtual Triathlon) for more details and to finish your sign up!
Not a swimmer? Don’t have a bike? That’s just fine! While our event is geared towards completing our unique triathlon, we want anyone and everyone to participate! We encourage you to use the event to challenge yourself and put in some hard work to show your support of our determined Kool friends. Choose the workout type that matches your abilities (for example, run/bike/run, or bike 17 & 21 & 31 miles, etc.) and go out and raise some awareness!
You’ll receive a Koolen-de Vries Syndrome awareness bracelet and a t-shirt at the end of the event, as well as a bib to print and display during your workouts (take pictures and post to help spread awareness) and access to the Facebook group for support.

2020 Kool Kampaign Virtual Meeting
2020-07-14 20:00 - 20:30
In 2019, the Koolen-de Vries Syndrome Foundation community teamed up to raise over $85,000 during the Kool Kampaign for Research. We blew past our $60,000 goal!
On July 17, 2020 – Koolen-de Vries Syndrome Awareness Day – we are kicking off the 2020 Kool Kampaign for Research. You might be surprised how easy it is to reach out to your family, friends and social media contacts to ask them to join us in raising money for research.
Join us on July 14, 2020 at 8:00 PM (ET) for a Zoom call and learn about our Kool Kampaign and how you can get involved! Registration is limited to 100.
Once you have RSVP’d, Zoom meeting log-in information will be emailed to you.

2019 KdVS Triathlon
2019-10-17 - 2019-11-17
Raise awareness for Koolen-de Vries Syndrome and show your support for all of our hard-working friends living with KdVS!
**T-shirts are being ordered and registration has closed for the 2019 event. Our athletes are all hard at work logging miles!
Join Koolen-de Vries Syndrome Foundation in our 2019 “Tri” to be Kool Virtual Triathlon! This is our fourth annual Triathlon and this year all proceeds from the event will benefit a current KdVS Research Project investigating the syndrome on a cellular level.
The triathlon that can be completed from anywhere around the world between October 17 and November 17. Required distances are uniquely set (1.7 mile swim, 21 mile run, and 31 mile bike) in order to promote awareness of Koolen-de Vries Syndrome (KdVS). Distances can be broken down at your convenience or can be completed at once; you have one month to complete the events! After your purchase, please join the event Facebook Page (Tri to be Kool: Virtual Triathlon) for more details and to finish your sign up!
Not a swimmer? Don’t have a bike? That’s just fine! While our event is geared towards completing our unique triathlon, we want anyone and everyone to participate! We encourage you to use the event to challenge yourself and put in some hard work to show your support of our determined Kool friends. Choose the workout type that matches your abilities (for example, run/bike/run, or bike 17 & 21 & 31 miles, etc.) and go out and raise some awareness!
You’ll receive a Koolen-de Vries Syndrome awareness bracelet and a t-shirt at the end of the event, as well as a bib to print and display during your workouts (take pictures and post to help spread awareness) and access to the Facebook group for support.

KdVS Awareness Day
2019-07-17

2019 KdVS Patient Advocacy Summit
2019-06-27 - 2019-06-29 | Newpark Resort, Park City, Utah, 1476 Newpark Boulevard, Park City, UT, 84098, United States
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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

Agenda is tentative and subject to change.
Wednesday

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.

Thursday

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!

Friday

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!

Saturday

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.

Sunday

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.
Speakers

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).”

Read more about Dr. de Vries

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

Read more about Dr. Koolen

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.

Read more about Dr. Myers

Prof. Angela Morgan Prof. Morgan will be presenting... Prof. Angela Morgan will be presenting on….

Read more about Prof. Morgan

Dr. Nael Nadif Kasri Dr. Kasri will be presenting... Dr. Nael Nadif Kasri will be presenting…

Read more about Dr. Kasri

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 Sponsorship 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 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

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.

Online:
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 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. Extreme Fun 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! Around Town 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! Shopping & Fun 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! JTNDc3R5bGUlM0UlMEFkaXYlMjNyZWdpc3RyYXRpb24tc2VjdGlvbiUyMCU3Qm1hcmdpbi1ib3R0b20lM0ElMjAxMTVweCUyMCUyMWltcG9ydGFudCUzQiU3RCUwQSUzQyUyRnN0eWxlJTNF Registration 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! JTNDc3R5bGUlM0UlMEEud2MtdGFicy13cmFwcGVyJTJDJTIwLnByb2R1Y3RfbWV0YSUyMCU3QmRpc3BsYXklM0ElMjBub25lJTIwJTIxaW1wb3J0YW50JTNCJTdEJTBBLndvb2NvbW1lcmNlLXByb2R1Y3QtZGV0YWlsc19fc2hvcnQtZGVzY3JpcHRpb24lMjBwJTIwJTdCZm9udC1zaXplJTNBJTIwMjBweCUyMCUyMWltcG9ydGFudCUzQiU3RCUwQSUzQyUyRnN0eWxlJTNF

Rare Disease Day
2019-02-28

2018 "Tri" to be Kool Virtual Triathlon
2018-09-17 - 2018-10-17
** T-shirts are being ordered 10/2/2018. You are welcome to join our event between 10/2 and 10/17, but unfortunately, we can not guarantee extra t-shirts will be available.**
Join Koolen-de Vries Syndrome Foundation in our 2018 “Tri” to be Kool Virtual Triathlon! This is our third annual Triathlon and this year all proceeds from the event will benefit KdVS research. Earlier in 2018, we raised $50,000 that has been sent to Dr. Koolen and Dr. de Vries for an ongoing research project involving KdVS at a cellular and molecular level. We are hoping to raise another $10,000 to fully fund a PhD student to run the day-to-day research for an entire year ($60,000 USD total). It’s a perfect time to spread awareness about Koolen-de Vries Syndrome and challenge your friends and family to join in the event!

The triathlon can be completed from anywhere around the world between September 17 and October 17. Required distances are uniquely set (1.7 mile swim, 21 mile run, and 31 mile bike) in order to promote awareness of Koolen-de Vries Syndrome (KdVS) which is caused by a microdeletion at Chromosome 17 at the location 17q21.31 or a mutation of the KANSL1 gene in the same location. Distances can be broken down at your convenience or can be completed at once; you have one month to complete the events! After your purchase, please join the event Facebook Page (Tri to be Kool: Virtual Triathlon) for more details and to finish your sign up!

Not a swimmer? Don’t have a bike? That’s just fine! While the event is geared towards completing this unique triathlon, we want anyone and everyone to participate! We encourage you to use the event to challenge yourself and put in some hard work to show your support of our determined Kool friends. Choose the workout type that matches your abilities (for example, run/bike/run, or bike 17 & 21 & 31 miles, etc.) and go out and raise some awareness!

You’ll receive a Koolen-de Vries Syndrome awareness bracelet and a t-shirt at the end of the event, as well as a bib to print and display during your workouts (take pictures and post to help spread awareness) and access to the Facebook group for support.
