If you registered or want to register but missed the live event, on or about October 1, 2021, all materials will be available in a dedicated Dropbox for all registrants.  These materials will remain available until December 31, 2021, and include speaker presentation decks, recordings of the live presentations and links to the videos that were shown from our adults with 5p- and one of our siblings with a younger sister with 5p-.

You can still register until December 15, 2021 by clicking the BOOK ONLINE button above.


The 5p- Society is pleased to announce our annual two-day event will be hosted virtually this year!

When & Where?

  • Saturday, Sept. 18 & Sunday, Sept. 19
  • Saturday times: 9:00AM-6:30PM Pacific Time Zone/12:00PM- 9:30PM Eastern Time Zone
  • Sunday times:  9:00AM-4:30PM Pacific Time Zone/12:00PM-7:30PM Eastern Time Zone
  • Zoom details provided to registrants

Who should attend?

  • Individuals with 5p- Syndrome
  • Family of children & adults with 5p- Syndrome
  • Friends of individuals with 5p- Syndrome
  • Caretakers, therapists, teachers & medical professionals

Why should I attend?

Throughout the event, we plan to have our very popular parent sessions, a place for parents to interact with each other and talk, engage, help, network and learn from each other in a virtual space.

We also plan to have several presentations on topics of interest to the 5p- community.  These presentations will be designed to last approximately 30 min with live Q&A time to follow.  The presentations themselves will either be live or pre-recorded.

Join us for social time with Virtual Coffee Breaks where families can interact and chat.  Get ready to dance at our Virtual Dance.

What’s on the schedule?

The finalized schedule will be shared in the coming weeks as speakers and events are confirmed.  Some of the confirmed topics include:

  • Cortical Visual Impairment & neurological vision issues
  • Genetics & 5p- Research
  • Physical Therapy & 5p- Syndrome
  • Special Needs Trust vs. ABLE Accounts
  • Transition through Adulthood
  • Positive Behavior Therapy
  • 5p- Syndrome and Infections
  • Welcome to My World – a program to help instill empathy as a person navigates what it is like to have a disability.

What is the cost to attend?

Note that registered attendees will have access to presentations that are recorded and available for three months after the event, in case you cannot attend live.  You can register at anytime now until December 15, 2021.

  • $25.00 per email- 5p- Society Members
  • $50.00 per email – Non-Members (Opportunity to register as a Member for $25.00)
  • $50.00 each – Professionals

How can I sponsor?

We are actively looking for Virtual Conference Sponsors to assist us with the technological costs.  If you know of any business who may be interested, or if you have any questions or concerns, please contact Michelle Myatt at mmyatt5pminussociety@gmail.com or direct them to our dedicated sponsor page.

Thank you to our Sponsors!!

The Mayes Family


  • The Batdorff Family, North Carolina
  • The Bowdish Family
  • The Holley Family
  • The Topping-Shuetz Family


  • The Arango Family, Florida



Conference Agenda

*Subject to Change

All times are in US Pacific and Eastern Times


9:00am – 9:50am PT

12:00pm – 12:50pm ET

Virtual Welcome

Nick Wallace, President 5p- Society

Meet a few of our very special friends

10:00am – 10:50am PT

1:00pm – 1:50pm ET

Genetics and Researching 5p- Syndrome

Sean Fox, Ph.D., Biomedical Sciences,

East Tennessee State University

11:00am – 11:50am PT

2:00pm – 2:50pm ET

5p- Syndrome and Infections:  Research Update

András Spaan, M.D., Ph.D.,

The Rockefeller Institute, New York

12:00pm – 12:20pm PT

3:00pm – 3:20pm ET

Virtual Coffee Break
12:30pm – 1:20 pm PT

3:30pm – 4:20pm ET

Physical Therapy and 5p- Syndrome: Research Findings

Laurel D. Abbruzzesse, PT, Ed.D,

Columbia University, New York

1:30pm – 2:20 pm PT

4:30pm – 5:20 pm ET

Cortical Visual Impairments and Neurological Vision Issues

Alex Olson & Lisa Linda, CVVI

2:30pm – 3:30pm PT

5:30pm – 6:30pm ET

Choose one

Mom’s Meetup – Let’s Talk Self-Care Facilitated by Cristol O’Loughlin, Angel Aid

Grandparent’s Support Session

3:30pm – 4:30pm PT

6:30pm – 7:30pm ET

Dinner/Snack Break
4:30pm – 5:30pm PT

7:30pm – 8:30pm ET

Virtual Dance
5:30pm – 6:30pm PT

8:30pm – 9:30 pm ET

Virtual Social Hour


9:00am – 9:50am PT

12:00pm – 12:50pm ET

Welcome Back

Laura Castillo, Executive Director

Meet some of our very special individuals

10:00am – 10:50am PT

1:00pm – 1:50pm ET

Navigating Transition through Adulthood

Dennis Campbell, Ph.D., Chair Professional Advisory Board, Retired University of South Alabama

11:00am – 11:50am PT

2:00pm – 2:50pm ET

Effective Positive Behavior Therapy

AmySue Reilly, Ph.D., Retired, Auburn University

12:00pm – 12:20pm PT

3:00pm – 3:20pm ET

Virtual Coffee Break
12:30pm – 1:20pm PT

3:30pm – 4:20pm ET

Special Needs Trust v. ABLE Act

Kacy Seitz

1:30pm – 2:20pm PT

4:30pm – 5:20pm ET

Welcome to My World

Becky Owens, Board Member

2:30pm – 3:20pm PT

5:30pm – 6:20pm ET

Choose one

Medically Fragile – Translocation Parent Panel

Dad’s Talk – An open dialogue with Dad’s regarding raising a child with 5p-

Virtual Coffee Shop

3:30pm – 4:30pm PT

6:30pm – 7:30pm ET

Closing Session

Meet some of our very special individuals


Click here to Register

After you register your confirmation email will provide you with the information you need to join the meeting.

Download the 5p- Society Virtual Conference 2021 mini brochure.