2024 STXBP1 Summit+ Family Agenda
Welcome to the annual STXBP1 Summit+ in Drexel Hill, PA.
The Family Meeting runs Friday-Sunday, kicking off Friday evening with a Star themed Family & Researcher Dinner followed by a full day of sessions on Saturday and a wrap-up with Breakout sessions on Sunday morning.
Join us onsite over the weekend or virtually on Saturday during our YouTube Livestream.
See our daily agendas below.
Friday, 19 July: Registration, Research Opportunities & Dinner
Registration
Research Opportunities
Star Themed Researcher/Family Dinner & Dance Party 6 - 9 pm (costumes optional and encouraged)
Saturday, 20 July: Family Day 1: Scientific Sessions
| Time | Session | Talk | Speaker |
|---|---|---|---|
| 7:30 – 8:15 am | Social Breakfast | Birds of a feather tables: Newly Diagnosed, Families with young children, Teens, Adults, International, Grandparents | |
| 8:15 - 8:30 am | Family Stories | Newly Diagnosed | STXBP1 Family Speaker |
| 8:30 - 9:00 am | Kick Off | Kickoff and Foundation Update | Charlene Son Rigby, MBA & Melissa Hioco |
| 9:00 - 9:20 am | Clinical Session | STXBP1 Clinical Update | Ingo Helbig, MD |
| 9:20 - 9:40 am | Clinical Session | STARR Study Update | Sarah Ruggiero, MS and Andrea Miele, PhD |
| 9:40 - 10:100 am | Translational Research | State of Translational Research in STXBP1 | Ben Prosser, PhD |
| 10:10 - 10:30 am | Translational Research | Genetic Therapy Development | Mingshan Xue, PhD |
| 10:30 - 11:00 am | Break | ||
| 11:00 - 11:10 am | Family Stories | Grandparent | STXBP1 Family Speaker |
| 11:10 - 11:30 am | Clinical Trial Readiness and Natural History Studies | Clinical Trial Readiness | Ana Mingorance, PhD |
| 11:30- 11:50 am | Clinical Trial Readiness and Natural History Studies | Data Collection & Registry Panel | RARE-X, Simons, Ciitizen |
| 11:50- 12:10 am | Clinical Trial Readiness and Natural History Studies | Biomarkers | Jim Goss, PhD |
| 12:10 - 1:10 pm | Social Lunch | Birds of a feather tables: Newly Diagnosed, Families with young children, Teens, Adults, International, Grandparents | |
| 1:10 - 1:20 pm | Family Stories | Teenage or Adult STX'er | STXBP1 Family Speaker |
| 1:20 - 1:40 pm | Community | How to Participate in the STXBP1 Community | Melissa Hioco & Cristina Brennan |
| 1:40 - 2:00 pm | Community | Studies You Should Participate in | Jackie Steinberg |
| 2:00 - 2:20 pm | Community | Global Connect & Global Updates | Charlene Son Rigby |
| 2:20 - 2:30 pm | Family Stories | Sibling | STXBP1 Family Speaker |
| 2:30 - 3:00 pm | Break | ||
| 3:00 - 4:00 pm | Industry Partners | Industry Partners | |
| 4:00 - 4:10 pm | Closing Remarks | Charlene Son Rigby | |
| Evening | Family Social Events | TBD - More Details Soon! |
Sunday, 21 July: Family Day 2: Support Sessions
| Time | Session | Talk | Speaker |
|---|---|---|---|
| 7:30 – 8:30 am | Social Breakfast | Birds of a feather tables: Newly Diagnosed, Families with young children, Teens, Adults, International, Grandparents | |
| 8:30 - 9:45 am | Parent to Parent Track I | Parent to Parent Panel - All things STX and the ups & downs of parenting a child with STXBP1 | Parent Community |
| 8:30 - 9:45 am | What Does it Mean to be a Complex Communicator? AAC 101 | Communication is a complex activity that individuals learn along a developmental framework, however when someone can’t talk, walk, or interact like their peers, we know that communication becomes affected. This session will provide education on making sense of what communication is, how we can think about it in a realistic mindset, and how AAC/intervention can support it. | Ashley Johnson, MA, CCC-SLP |
| 9:45 - 10:00 am | Break | ||
| 10:00 - 11:15 am | Parent to Parent Track II | Parent to Parent Panel - All things STX and the ups & downs of parenting a child with STXBP1 | Parent Community |
| 10:00 - 11:15 am | The Other Side of Special: Navigating the Messy Emotion of Grief and Empowering STXBP1 Parents & Family Members with Tools for Healing | This workshop offers a supportive space for STXBP1 parents and other family members to explore the complex emotions of grief and equip themselves with practical tools for processing and healing. Grieving the life you imagined for your child, grappling with the challenges of their diagnosis, and navigating the uncertainties of the future can be overwhelming. However, by acknowledging and understanding your grief, you can begin a transformative journey towards acceptance and resilience. | Carrie Holt, Author, Speaker, Special Needs Mom |
| 11:25 - 11:45 am | Closing Remarks | Charlene Son Rigby & Melissa Hioco |