Biennial Family Conference

Registration is open!

Join us on Friday August 6th from 6-8pm EST for our opening keynote speaker and social event and Saturday August 7th from 10am to 3pm EST for our main sessions.

Our conference this year is virtual event, with activities for kids over 8 and programming for families and people with CLOVES.

Opening Keynote Speaker: Rick Guidotti of Positive Exposure

Rick Guidotti is an award winning photographer, who founded Positive Exposure in 1997 after a chance encounter in 1997 with a young lady living with albinism at a bus stop in New York City.  As an artist, Rick was taken by her extraordinary beauty. In a quest for a better understanding of albinism, Rick sought out medical textbooks, where he was affronted by the dehumanizing images depicting disease, lacking all humanity. 

Rick has since spent more than twenty years collaborating internationally with advocacy organizations/NGOs, medical schools, universities and other educational institutions to effect a sea-change in societal attitudes towards individuals living with genetic, physical, behavioral or intellectual difference.

Main Session Speakers:

Dr. Denise Adams of the Children’s Hospital of Philadelphia/Complex Vascular Anomalies Program

  • “A Vascular Anomalists Historical Perspective of PIK3CA Related Disorders” 

Dr. Guillaume Canaud of Project Cure Overgrowth Syndromes

  • “‘Recent advances in PIK3CA research from Canaud Lab”

Dr. Kim Keppler-Noreuil of The Waisman Center Medical Genetics Clinic 

  • Presentation title coming soon

Ralitsa Madsen, PhD of the Cell Signaling Group of UCL Cancer Institute

  • “New models for pre-clinical studies of PIK3CA mutations” 

Dr. Kathleen Bogart of the Oregon State University Disability and Social Interaction Lab

Dr. Rhonda Robert of the University of Texas MD Anderson Cancer Center

Adults with CLOVES Question and Answer panel and breakout groups on a variety of topics


Activities for kids age 8 and up

We are partnering with Zebra Crossings again this year for our youth programming.

Zebra Crossings will offer a variety of fun and interactive sessions in breakout rooms of 10 participants.

Friday August 6:

·      7-8pm EST : We will kick off with some introduction games and a large group games like Jeopardy or Name That Tune.

Saturday August 7:

·      10am to 12pm: In the morning, we will give a snapshot of the day and a quick introduction game. Later in the morning, we will work on an age appropriate creative project or challenge that only require some basic supplies.

·      1pm – 3pm: After lunch, we will come back together for another round of new games and activities.


Read these registration guidelines before registering

Adult Registration: Adult registration is $40 and will allow you to participate on one device. Additional adults in a family may register for $20. If your financial situation precludes you from paying for registration, please email [email protected] for a free ticket. We have a limited number of free tickets to offer to people with CLOVES and their families.

Child Registration: Registration for kids age 8 years to 18 years old is $15. This child registration will allow participation on one device. If your financial situation precludes you from paying for registration, please email [email protected] for a free ticket. We have a limited number of free tickets to offer to people with CLOVES and their families.

If you’d like to make a donation for a family to attend this conference for free, please donate here and write conference in the memo line.

Full refunds will be provided until June 15, 2021.  Registrants must request in writing to [email protected], the request for a refund.  Refund requests will be processed within three business days of the request.

Registration will close on Friday July 23, 2021.

Any questions? Email us at [email protected]



Thanks to Lindsay for providing this recap of our 2019 Family Conference