3q29 Deletion Family Web Meeting Series
October 2020-October 2021Let us know if you have questions!
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 information link: http://genome.emory.edu/3q29/contact-us/
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
October 2021: Spreading the Word: How best to disseminate research findings and information about 3q29 deletion to families, providers, and the community
When: Friday, 10/22/21 from 12 – 1:30 PM EST
Description: Thanks to your participation and engagement in research, we have made important strides in understanding 3q29 deletion syndrome. Although there is more work to be done, it is critical that what we do know (and continue to learn) be shared broadly with you, the community, care providers, and other researchers.
The goal of this webinar is to hear from YOU. What are your ideas and priorities for how we widely and effectively share research findings within the 3q29 community, the broader community, and among providers? Together we will brainstorm and discuss ideas that will inform the next steps towards broad dissemination of research findings, awareness raising, and advocacy.
Presenters: Drs. Jennifer Mulle & Melissa Murphy
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
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
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
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
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.
May 2021: Mental Health and Psychosis
When: Monday, 5/3/2021 from 12-1:30 pm EST
Presenter: Drs. Elaine Walker & Joe Cubells
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
June 2021: Medical and physical characteristics associated with 3q29 deletion
When: Friday, 6/25/2021 – 12 PM Eastern Time
Presenter: Drs. Rosanna Sanchez & Michael Gambello
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.
September 2021: Dating & Interpersonal Relationships - Parent & Young Adult Session
When: Friday, 9/10/21 from 12 – 1:30 PM EST
Description: Please note that the format of this webinar will vary from past meetings.
The session will begin with an introduction and information for a general audience. Separate breakout rooms for parents and adult attendees with 3q29 deletion will follow.
Parents of children at any age are invited to attend the web meeting and parent breakout room. Because of the topic, the young adult-adult breakout room will be limited to individuals with 3q29 deletion who are 18 years of age or older.
In this session we will discuss relationships, dating, and sexuality for neurodiverse individuals, specificaly those with 3q29. We will review ways to support adults as they safely explore these topics and will provide breakout rooms for parents and adults to speak spearately with the speakers about their own experiences, challenges, concerns, and triumphs.
Presenters: Dr. Amanda Platner & Holli Abernathy
Amanda Platner, PsyD, ABPP is the Director of Adult Programs at the Emory Autism Center, as well as Assistant Professor in the Department of Psychiatry and Behavioral Sciences at the Emory University School of Medicine. Dr. Platner joined the EAC in the Summer of 2020. Prior to joining the EAC, Dr. Platner was a staff psychologist in the Behavioral Health Department at Franciscan Children’s in Brighton, MA. She completed her undergraduate education at Brandeis University and her graduate training at The Chicago School of Professional Psychology. She completed two years of postdoctoral fellowship in autism spectrum disorder and related neurodevelopmental disorders at the Marcus Autism Center/Emory University and at the MGH Lurie Center/Harvard University. As a clinical psychologist, Dr. Platner specializes in working with individuals and families impacted by neurodevelopmental disorders and is particularly interested in intervention, assessment, as well as working with individuals who have comorbid medical and/or mental health conditions.
Holli Abernathy, MS, APC, is a counselor at the Emory Autism Center, having worked at the EAC since March 2019. Ms. Abernathy completed her undergraduate studies at Young Harris College, where she received a bachelor’s degree in psychology. In 2019, she earned her master’s degree in Clinical Counseling Psychology from Brenau University. Ms. Abernathy works with the Education and Transition Services and the Adult Services at the EAC, providing individual counseling and group services to adolescents and young adults diagnosed with ASD. In addition, Ms. Abernathy has developed several ASD specific curricula including a healthcare transition curriculum for transition aged youth and a self-awareness guide for ASD-specific counselors.
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
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- Check in will be late afternoon on Friday, October 1, 2021
- Check out will be mid-day on Sunday, October 3, 2021
Where: Camp Twin Lakes @ Camp Will-A-Way in Winder, Georgia.
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- Located in Northeast Georgia about 1.25 hours from Emory University
What: Outdoor explorer camp weekend for the whole family.
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- Hosted by Camp Twin Lakes: https://camptwinlakes.org/ . An organization that specializes in camping experiences for children with special needs and their families.
- Possible activities include archery, swimming (weather dependent), boating/canoeing, climbing, candle making, horseback riding, and zipline. Activities are accessible for all ability levels.
Cost: We will cover lodging and meals for the weekend. Families are responsible for travel to and from the camp.
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 “October 2021: 3q29 Deletion Families Camp” tab and click link under “How do I sign up?” to register.
If not enrolled in registry, please visit registry page to sign up. https://3q29deletion.patientcrossroads.org
*Due to limited space, advanced registration is required.
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