DYRK1A Syndrome Family Conference & Scientific Roundtable

Amy Clugston

We welcome families, friends & professionals to join us in connecting with others and learning from professionals about  DYRK1A Syndrome.

St. Charles Convention Center

<h2>Draft Summary Agenda</h2><h3>Friday, June 19th, 2026</h3><ul><li>9:00am to 4:30 pm - Scientific Roundtable</li><li>5:00 pm to 7:00 pm - Reception Dinner and theatre fun</li></ul><h3>Saturday, June 20th, 2026</h3><ul><li>9:00 am to 4:00 pm – Speakers &amp; Lunch</li><li>Break for Dinner on your own</li><li>7:00 pm to 9:00 pm - (Themed) PJ Ice-Cream Social Dance</li></ul><h3>Sunday, June 21st 2026</h3><ul><li>8:30 am – Family Fun Outing Activity TBD</li></ul><h3>Lodging Group Rate;</h3><ul><li>We have a group rate at Embassy Suites by Hilton St. Louis St. Charles $170 a night</li><li>Reserve by phone at 636-946-5544 or the <a href="https://www.hilton.com/en/attend-my-event/dyrk1afamilyconferencejune2026/" title="https://www.hilton.com/en/attend-my-event/dyrk1afamilyconferencejune2026/" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">Reservation Site</a>.</li><li>Book by May 26th, 2026 to get the group rate.</li></ul><h3>T-Shirts;</h3><ul><li>T-shirts can be ordered with the registration and will be available at the conference.</li><li>Must be ordered by May 15st, 2026</li></ul><h3>DYRK1A Bio;</h3><ul><li>Use this <a href="https://www.canva.com/design/DAG_EM-9itY/jb-dg_Hm7KJucR3_CPdGXA/view?utm_content=DAG_EM-9itY&amp;utm_campaign=designshare&amp;utm_medium=link&amp;utm_source=publishsharelink&amp;mode=preview" title="https://www.canva.com/design/DAG_EM-9itY/jb-dg_Hm7KJucR3_CPdGXA/view?utm_content=DAG_EM-9itY&amp;utm_campaign=designshare&amp;utm_medium=link&amp;utm_source=publishsharelink&amp;mode=preview" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">Canva Template</a> to create a bio of the person with DYRK1A Syndrome and submit it to us at dsia@dyrk1a.org. We will print it to include in the conference packet.</li></ul><h3>Donations;</h3><ul><li>The registration cost doesn't cover all the activities of the event. Please consider donating and/or asking for donations. We are a nonprofit tax-exempt organization DYRK1A Syndrome US</li><li><a href="https://www.paypal.com/fundraiser/charity/3698256" title="https://www.paypal.com/fundraiser/charity/3698256" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">Paypal Donation Site </a>has no transaction fees; we get 100% of your donation.</li><li>Donations can also be sent to DYRK1A Syndrome US, 1745 Lorna Ln, Otsego, MI 49078.</li><li>These donations will help offset the additional cost of food, venue, activities, and scholarships.</li></ul><h3>Scholarships;</h3><ul><li>Scholarships can help those who may find it difficult to attend due to cost.</li><li>To apply for a scholarship, fill out this<a href="https://docs.google.com/forms/d/e/1FAIpQLSegLsjk7f-PMQHSTAoIhaYi_9tlrX7rj-slCHdlD-7fwSNPzg/viewform" title="https://docs.google.com/forms/d/e/1FAIpQLSegLsjk7f-PMQHSTAoIhaYi_9tlrX7rj-slCHdlD-7fwSNPzg/viewform" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer"> form</a>.</li></ul><h3>Registration;</h3><ul><li>This year, we've changed the registration from a whole family model to individual registrations. Also, in order to have a better count of attendees' participation, we have separated the tickets by event: Friday Scientific Roundtable, Family Conference (Friday eve + Saturday), and Sunday Family Outing. We hope this will make for an easier planning process, and a better use of our funds by not overspending. Early pricing ends May 3rd.</li></ul><h3>Deadlines;</h3><ul><li>April 5th, 2026 is the deadline for scholarships.</li><li>April 16th, 2026 awardees will be notified.</li><li>May 29th, 2026 is the deadline for hotel rates.</li><li>Early registration ends May 3rd, 2026</li><li>Late registration between May 4th to June 11th, 2026</li></ul><p><br></p><p><br></p>

<p>Here is the T-shirt design</p><p><br></p>

Friday, June 19th, 2026

We will be discussing some past or current research related to DYRK1A. Parents & family members are welcome to join us though there will be a lot of medical and scientific jargon being used. There won't be childcare available during this time, so we will have a virtual option for this portion of our event.

Scientific Roundtable

We will have dinner available for the whole family. During the last half of the evening, we  will have a planned activity.


Dinner Reception Meet & Greet 

Saturday, June 20th 2026

We will have a variety of speakers on different topics. Childcare will be available during this time. Please register for childcare so we can have an accurate number to have the proper support.

Speaker Sessions

We will provide lunch for the whole family. 

Lunch Provided

Speakers continue and we will break out into smaller groups, each group will be about different topics. Childcare will be available during this time. Please register for childcare so we can have an accurate number to have the proper support.

Speakers Continue

We will break off and have dinner on our own or get together with another family for some extra connection time. Remember to leave time to put your pajamas on.

Dinner Time Break

Get ready to have some fun in your pajamas. We will have a DJ, Photo Booth and Ice Cream.

PJ Dance & Ice Cream Social

Sunday, June 21st 2026

We are still planning our Sunday activity.. We typically provide transportation to our Sunday activity. We will update as the plans get more defined.

Family Fun Outing

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DYRK1A Syndrome Family Conference & Scientific Roundtable

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