3q29 Deletion Family Web Meeting Series

October 2020-September 2021

3q29 Deletion Family Web Meeting Series October 2020-September 2021

***3q29 Deletion Families Camp: October 1-3, 2021***

Please see below for more information

Join the 3q29 Registry

Let us know if you have questions!

9 + 5 =

Dear Families:

As you know, we’ve been engaged in research about the 3q29 deletion interval for some time. We’d like to share some of what we’ve learned in a series of interactive web-based meetings. The meeting schedule is below. Most meetings take place at 12 pm Eastern Time Zone and are expected to last between 60-90 minutes, but please check the schedule for exact start times as some session times vary.

For most meetings, no pre-registration for the sessions is required. We will send a link to join the meeting to the email address we have for you in the 3q29 Registry. If you have not registered in the 3q29 Registry, now is a great time to do so, so that you can receive the meeting link. Registry link: https://3q29deletion.patientcrossroads.org.  

You may be wondering why we don’t just post the meeting links. The answer is, we feel very protective of you. We want to be sure that people who join the webinar are part of our community. If you would like to share the link with family or caregivers, that is certainly appropriate.

Please reach out with any questions to 3q29project@emory.edu or use the form included on this page. We look forward to seeing you!

Best,
The 3q29 Project Families Meeting Planning Team

3q29 Web Meeting Series 2020-2021 Schedule

Unless otherwise noted, all meetings are currently planned for 12-1:30 pm Eastern Time.

(Sometimes unforeseen circumstances require schedule adjustments or changes. If that happens, we will update this website and communicate via email as necessary. Please also check local time for changes related to daylight savings.)

Access content from past web-meetings

3q29 Families Meeting

Upcoming Sessions

June 2021: Medical and physical characteristics associated with 3q29 deletion

When: Thursday, 6/25/2021 – 12 PM Eastern Time

Presenter: Drs. Rosanna Sanchez & Michael Gambello

Where will the session take place? Zoom link sent through 3q29 Registry https://3q29deletion.patientcrossroads.org

How do I sign up? No pre-registration required. A link will be emailed to the email address on record in the 3q29 Registry: https://3q29deletion.patientcrossroads.org . If not enrolled in registry, please click link to register.

August 2021: Dating & Interpersonal Relationships - ParentSession

When: August 2021 – To be determined

Presenter: Dr. Opal Ousley

Where will the session take place? Zoom link sent through 3q29 Registry

How do I sign up? No pre-registration required. A link will be emailed to the email address on record in the 3q29 Registry: https://3q29deletion.patientcrossroads.org

September 2021: Dating & Interpersonal Relationships - Young Adult Session

When: September 2021 – To be determined

Presenter: Dr. Amanda Palmer

Where will the session take place? Zoom link sent through 3q29 Registry

How do I sign up? No pre-registration required. A link will be emailed to the email address on record in the 3q29 Registry: https://3q29deletion.patientcrossroads.org

September 2021: How to spread the word about research findings

When: Friday, 9/10/2021 from 12-1:30 pm EST

Presenter: Drs. Jennifer Mulle & Melissa Murphy

Where will the session take place? Zoom link sent through 3q29 Registry

How do I sign up? No pre-registration required. A link will be emailed to the email address on record in the 3q29 Registry: https://3q29deletion.patientcrossroads.org

3q29 Deletion Families Camp: October 1-3, 2021

*Save the date: 3q29 deletion families camp!*

When: October 1-3, 2021 (Friday afternoon-Sunday morning)

Where: Camp Twin Lakes @ Camp Will-A-Way in Winder, Georgia.

    • Located in Northeast Georgia about 1.25 hours from Emory University

What: Outdoor explorer camp weekend for the whole family.

    • Hosted by Camp Twin Lakes: https://camptwinlakes.org/ . An organization that specializes in camping experiences for children with special needs and their families.

Cost: We will cover lodging and meals for the weekend. Families are responsible for travel to and from the camp.

*Due to limited space, advanced registration is required. Details will be forthcoming.

Past Sessions

October 2020: 3q29 Deletion Overview

Presenter: Dr. Jennifer Mulle, Project Director

January 2021: Cognitive profile and social disability

When: Wednesday, 1/13/2021 from 12-1:30 pm EST

Description: As parents know, individuals with 3q29 DS have very unique cognitive and social profiles. Many individuals exhibit strengths in verbal skills, social motivation, and interaction that sometimes mask their vulnerabilities in other areas. There is an increased risk for Autism Spectrum Disorder (ASD) in 3q29 DS, which is a social disability. Even if individuals with 3q29 DS do not develop ASD, there still can be social delays that are not well understood by others. During this interactive panel, cognitive and social profiles will be discussed, including strategies to build upon areas of weakness while maximizing areas of strength.

Presenters: Drs. Celine Saulnier, Cheryl Klaiman, & Stormi White

Where will the session take place? Zoom link sent through 3q29 Registry

How do I sign up? No pre-registration required. A link will be emailed to the email address on record in the 3q29 Registry: https://3q29deletion.patientcrossroad.org

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February 2021: Anxiety, ADHD, and other neuropsychiatric symptoms

When: Tuesday, 2/2/2021 from 12-1:30 pm EST

Presenter: Drs. Lindsey Burrell, Elaine Walker, & Joe Cubells

Where will the session take place? Zoom link sent through 3q29 Registry

How do I sign up? No pre-registration required. A link will be emailed to the email address on record in the 3q29 Registry: https://3q29deletion.patientcrossroads.org

March 2021: 3q29 Awareness Day Celebration: Celebrating Our 3q29 Superheroes

*3q29 Awareness Day: Celebrating our 3q29 Superheroes*

When: Please join us on Monday, March 29, 2021 at 7:00 pm Eastern Time* // 4:00 pm Pacific Time for a celebration of our 3q29 Superheroes.

*International sessions organized based upon interest.

Description: Join us for a celebration of our 3q29 superheroes. We will breaking out into small age-based groups to celebrate the successes of individuals with 3q29 deletion. Each session will allow families to meet and interact with other families with individuals with 3q29 deletion around the same age.

Presenters: Christa Duggan, Melissa Lopez, and parent volunteers

Where will the session take place? Zoom link sent through 3q29 Registry: https://3q29deletion.patientcrossroad.org

How do I sign up? 3q29 registry members should click here to access our 3q29 families meeting webinar page. From there, scroll down and click “3q29 Awareness Day Celebration: Celebrating Our 3q29 Superheroes” tab and click link under “How do I sign up?” to register. 

If not enrolled in registry, please visit the 3q29 registry page to register (https://3q29deletion.patientcrossroad.org).

May 2021: Mental Health and Psychosis

When: Monday, 5/3/2021 from 12-1:30 pm EST

Presenter: Drs. Elaine Walker & Joe Cubells

Where will the session take place? Zoom link sent through 3q29 Registry

How do I sign up? No pre-registration required. A link will be emailed to the email address on record in the 3q29 Registry: https://3q29deletion.patientcrossroads.org

The Emory 3q29 Project ♦ Department of Human Genetics ♦ Emory University School of Medicine

615 Michael St, Suite 301 ♦ Atlanta, GA 30322 ♦ 404.727.3446 ♦ 3q29project@emory.edu