Inaugural
Conference
Philadelphia
research symposium
What the day is
On October 3, 15q13.3 families and the researchers and clinicians who work on 15q13.3 will spend a day in the same building. The morning will be four research talks. The afternoon will run consult rooms, family sessions, and a poster session side by side. Opening, meals, and closing are shared. Every research talk will be livestreamed and recorded, so families who cannot travel can watch live or later.
When we opened registration in June, the day was four research talks and family sessions. Since then, clinicians kept saying yes, and your survey responses kept telling us what the rooms should be for. The afternoon has grown well past what this page said in June. Details below.
The day at a glance
Times will be posted with the full program in September. Move between rooms as you like.
Research talks
An opening from Ian and Melissa, then four talks: Dr. Christian Schaaf, Dr. Cora Taylor, Dr. Karun Singh, and Dr. Takahiro Soda, with questions from the room and the livestream. Every talk will be recorded, with English subtitles posted afterward.
IEP and psychometric report review
Dr. Cora Taylor will meet families one on one to go through IEPs and psychometric reports, late morning through lunch. Bring your child's most recent evaluation or IEP report. Lunch is included for everyone.
Three things at once
Consult rooms
- Psychiatry, Dr. Takahiro Soda
- Behavior, Arielle Marshall, M.A., BCBA
- Neuropsychology and school reports, Regilda Anne A. Romero, PhD
- Genetic counseling, Geisinger
- Biobank sample collection, Geisinger
Family sessions
- Peer discussions, one group per hour: parents of children under 12, parents of 12 to 17 year olds, adults with 15q13.3 and their families, newly diagnosed families
- Facilitated small groups on the hard topics, one per hour: mental health and adolescence, aggression and dysregulation, adult transitions, feeding and sleep
- A workshop on briefing your pediatrician on 15q13.3, with a handout to take home
- OpenReach registry help from parent volunteers, no appointment needed
Posters and research Q&A
- A poster session with time to talk with the authors
- Live Q&A with Dr. Christian Schaaf, Dr. Karun Singh, and Dr. Cora Taylor, taking questions from the room and the livestream
Closing session and reception
A closing session on what we heard during the day and what Reed's Reach will take on next, then an evening reception for anyone who wants to keep talking.
Morning research talks
Talk titles and abstracts will be posted here as they are confirmed.
Dr. Christian Schaaf
Executive Medical Director of the Institute of Human Genetics. Dr. Schaaf leads Resolve 15q, a European consortium working on outcomes and biomarkers in 15q13.3 copy number variants.
Dr. Cora Taylor
Simons Searchlight Principal Investigator and clinical psychologist. Dr. Taylor works with the caregiver-reported data families have contributed to the Searchlight registry. She will also meet families one on one at midday to go through IEPs and psychometric reports.
Dr. Karun Singh
Senior Scientist at Krembil and Associate Professor at the University of Toronto. Dr. Singh's lab builds stem-cell-derived brain organoid models of 15q13.3 and works on the pharmacology that follows from them.
Dr. Takahiro Soda
Psychiatrist at the UF Center for Autism and Neurodevelopment. Dr. Soda works on mental health across the lifespan in neurodevelopmental conditions.
Afternoon consult rooms
Fifteen minutes one on one with a clinician. In-person registrants will get a booking link by email; walk-ins will be taken in unused slots. Bring reports.
PsychiatryDr. Takahiro Soda
BehaviorArielle Marshall, M.A., BCBA
Neuropsychology and school report reviewRegilda Anne A. Romero, PhD
Bring your child's most recent evaluation and go through it with her.
- Genetic counselingA genetic counselor from Geisinger will go through your child's diagnostic report with you in detail, by appointment or drop-in. The diagnostic-report booth will also be open during the morning break and lunch.
- Biobank sample collectionA Geisinger phlebotomist will be on site all day to draw blood samples for the 15q13.3 biobank, with consent handled at the conference. Families who want to contribute will be able to do it here instead of arranging a separate visit.
- IEP and psychometric review (midday)Dr. Cora Taylor, late morning through lunch. See the day at a glance.
Dates that matter
The venue holds 100 people, and between families, speakers, and clinicians we are past the halfway mark.
Reed's Reach rate at the Sonesta Philadelphia Rittenhouse Square, three minutes' walk from the venue. The block is small.
Your pre-conference survey link came by email. It sets the afternoon room topics.
Free. Meals included. One ticket per attendee.
Free. Research talks live, plus the subtitled recordings afterward.
Register now
Please select one ticket per attendee.
All tickets are free. If you are coming in person and can give a few hours on the day, take the volunteer ticket: registration desk, room help, getting families where they are going. Volunteers attend everything.
Pre-conference survey
If you registered, you received a survey link by email. Please take a few minutes with it. It is an IRB-approved research instrument, and it is also what sets the afternoon room topics and what the clinicians prepare for. The more families answer, the closer the afternoon is to what this community actually needs.
Your link is specific to your household. If you cannot find it, write to contact@reedsreach.org and we will resend it. The survey closes September 5.
Kids' program
A full-day program for children will run alongside the sessions, staffed by people who work with special-needs children, so parents can attend. If you have a child coming, note it on your registration and we will send the intake form by email.
Adults with 15q13.3 are attendees, not kids' program participants, and will have their own peer session in the afternoon.
For researchers and clinicians
If you work on 15q13.3 or on adjacent CNVs and neurodevelopmental conditions, register with the Researcher / Clinician ticket above. The research track will include the morning talks, an afternoon poster session with the accepted posters and short talks, a live Q&A, and an invited clinical-guidelines working group. The call for posters and short talks closed August 22; accepted presenters have been notified.
Questions: contact@reedsreach.org
FAQ
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1600 Market Street, 2nd floor, Center City Philadelphia. A modern building close to the Franklin Institute, Academy of Natural Sciences, Philadelphia Museum of Art, and Rittenhouse Square.
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We have a group rate at the Sonesta Philadelphia Rittenhouse Square, a three-minute walk from the venue. Book through the Reed's Reach link: https://book.passkey.com/go/ReedReachFoundation2026
The block is small and closes Tuesday, September 2. After that, rooms are at the hotel's public rate as available.
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Philadelphia is easily accessible via major interstates, international and regional airports, and is situated on the Northeast Corridor train line with easy accessibility to Boston, NYC, Washington, DC and points south.
If traveling by air internationally, we recommend booking international tickets as soon as possible, no later than August 4th for the best rates.
If traveling by air domestically, we recommend booking between August 4th and September 3rd to get the best airfare. -
Breakfast and lunch are included during the conference. The evening reception is also included.
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A full-day kids' program will run alongside the sessions, staffed by people who work with special-needs children. If you noted a child on your registration, you will receive an intake form by email that asks about age, medical needs, and what helps your child have a good day. If you did not note a child and need to, write to contact@reedsreach.org.
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Every registered household received a personal survey link by email. Responses are anonymized for research under an approved IRB protocol and are also used, in aggregate, to set the afternoon room topics. The survey closes September 5. If you cannot find your link, write to contact@reedsreach.org and we will resend it.
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Consults will be fifteen minutes with one clinician. In-person registrants will receive a booking link by email in September; walk-ins will be taken in unused slots. Bring your child's most recent reports: evaluations, IEP, diagnostic report. Consults are advisory and educational, not diagnosis or treatment, and do not replace your child's own care team.
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All morning research talks will be livestreamed, and the afternoon feed will carry a live Q&A with the speakers and poster walkthroughs. Registered livestream attendees will receive the viewing link by email the week of the conference. Recordings with English subtitles will be posted afterward, with translations to follow. Consult rooms and family sessions are in person only.
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During checkout you will be asked for a photo release so we can use photos that include you in updates we share with the community on our website, in social media, and through our mailing list.
Your privacy is of paramount importance to us. If you do not wish to be photographed you will be issued a ‘do not photograph’ lanyard on the day of the conference and photos that include you will not be shared. -
The conference will be held in an accessible location. If you have specific accessibility needs, please list them in the questionnaire during check-out and we will do our best to accommodate them.
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The conference will be held in English. We will offer translations of the livestreams after the conference.
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You can cancel at any time through your event link included in your receipt.