Opening reception will be held at 16 on the Park at the hotel from 7-9pm on May 12 with an award for a medical professional, advocate, or policy maker who has made substantial contributions to prenatal education about disabilities over the past 10 years.

May 13, 2022 Schedule

  • 8-8:30am: Continental Breakfast and welcome. Breakfast available at 7:30 to start promptly at 8am.
  • 8:30-9am: Welcome and Message by Alex Pender, Joseph P. Kennedy Jr. Foundation Trustee, and Mitchell Levitz
  • 9-10:45am: Presentations by speakers:
    • Overview of the current state of education about disabilities for expectant parents, review collaborative accomplishments between the medical and advocacy communities, and apply the health equity lens: Stephanie Meredith, MA and Roxanne Hoke-Chandler, MS
    • Review of laws and regulations pertaining to the provision of information following prenatal screening: Mark Leach, MS, JD
    • Review of the medical organization guidelines regarding prenatal education about genetic conditions: Dr. Brian Skotko and Katie Stoll, MS, CGC
    • Review of education initiatives for medical providers delivering a diagnosis: Angela Trepanier, MS, CGC
    • Prenatal treatments and the NIH-supported INCLUDE project: Dr. Diana Bianchi
    • Review of federal reports/grants pertaining to prenatal education about genetic conditions: Dr. Kara Ayers
  • 10:45-11am: Break
  • 11-11:45am: Discussion Topic Table #1. Divide into tables where each table will be focused on one of the following 8 topics. Each table is interdisciplinary and will focus on identifying at least the top 3 most critical problems to solve for each discussion topic.Directions: Your #1 and #2 table topics are listed on your name tags and have been assigned based on your preferences listed in the Prenatal Summit survey and the interdisciplinary composition of the table. Each table will have a table sign, a community conversation guide, a pre-assigned table coordinator, table host, and a notetaker.
    1. Evaluating disability representation and education in organizational policies/guidelines
    2. Assessing ethical practices/disability studies perspective regarding prenatal screening and disability
    3. Training for healthcare professionals and students about genetic conditions and disability equity
    4. Ensuring best practices for delivering a diagnosis
    5. Researching to improve the diagnosis experience and provision of information about conditions
    6. Developing and disseminating patient education tools about conditions
    7. Addressing ableism and stigma
    8. Public policy and legislation such as Down Syndrome/Genetic Condition Information Acts, Wrongful Birth and Wrongful Life
  • 11:45-12:30am: Discussion Topic Table #2. Each table should be interdisciplinary and should focus on identifying at least the top 3 most critical problems to solve for each discussion topic.
  • 12:30-2:00pm: Working lunch while table leaders debrief the entire group on the outcomes of the discussions and then entire group votes to identify most critical priorities to solve in each area.
  • 1:45-2pm: Bio Break and Pegasus Project Highlight by Dr. Vardit Ravitsky
  • 2-3pm: Divide into 8 tables again. Return to Topic Table #1. Identify at least 3 solutions, strategies and action steps to solve challenges.
  • 3-4:00pm: Report out the solution ideas for each group and document the results. Led by Dr. Marsha Michie.