Registration is open!
Join us for the 2023 CLOVES Family and Scientific Engagement Conference on Saturday June 3, 2023 in Cleveland, Ohio.
We are bringing together people with CLOVES and their families, clinicians, scientists, pharmaceutical leaders and supporters to connect, learn and to hear the latest updates in research.
Together we all share the same mission: to improve the lives of those living with CLOVES Syndrome and to accelerate research and treatment of all PROS Conditions.
Location:
Embassy Suites by Hilton Cleveland Rockside in Cleveland, Ohio
We have a limited number of hotel rooms reserved for our guests. Please reserve your room early using this link! Breakfast is included with your hotel reservation.
Rooms & Rates
- 2 Room Suite-2 Double Beds-nonsmoking – $139.00
- 2 Room Suite-1 King Bed-nonsmoking – $139.00
- 1 King Suite Mobility Access Roll-in Shower – $139.00
Closest international airport – Cleveland Hopkins International
Agenda:
Friday June 2nd from 5 – 8 pm
- CLOVES Community Dinner at Embassy Suites Cleveland Rockside
Saturday June 3rd from 9am – 5pm
Agenda (subject to change):
- Riley Cerabona – Welcome Speaker Keynote
- Dr. Denise Adams, Director of the CVAP at Children’s Hospital of Philadelphia – “How history and research has informed our current clinical practice for CLOVES”
- Dr. Guillaume Canaud of Canaud Lab and COSY – “What’s hot and what’s new in PIK3CA and overgrowth syndromes?”
- Dr. Bryan Sisk of Washington University of St. Louis – “VACOM Study Findings and Direction of Future Research”
- Dr. Ralitsa Madsen of MRC-Protein Phosphorylation and Ubiquitylation Unit, University of Dundee – “The importance of reliable communication: with patients, with cells, with PI3K”
- Prof Rob Semple of the University of Edinburgh – “iPSC Modeling”
- Dr. Hannah Brunsdon of Patton Lab – “Zebrafish Models of CLOVES”
- Dr. Anna Kerr of Ohio University – “Supporting our loved ones with physical differences: navigating stares, cultivating self esteem and managing stigma”
- Julie Sapp of the National Institutes of Health – “Genetics Question and and Answer session”
- Adults with CLOVES + Caregivers of children with CLOVES Panel
In addition, we are providing moderated, small group discussions and opportunities to learn and connect on topics such as: shoe maker workshop and life hacks, body image and stigma, genetics question and answer session, an Adults with CLOVES group, and the latest research and treatment updates.
Sunday June 4th
- Optional family friendly activities TBD
Concurrent Childcare/Teen Programming: will be provided for people over the age of 6 years old, on site by Corporate Kids Events.
Register here! Deadline to register for the conference is Friday April 28, 2023 or sooner if we reach capacity.
About registration : There are THREE types of tickets. One option is for the Friday Community Dinner on June 2nd AND conference registration on June 3rd. The second option is for Conference registration only. The third is a virtual livestream ticket to the conference. Please review the ticket options below in full before registering, and reach out to [email protected], if you have any questions.
We have a limited amount of free registrations for those who cannot afford to pay the admission price. If you would like to request a discounted admission, please email Shannon Burkoth at [email protected].
Travel scholarships are closed – Deadline to apply was Friday March 10, 2023.
Thank you to our Silver Meeting Sponsor Novartis. As a sponsor, your contribution is vital to continue our important work!
FAQ’s:
Q: I have children under the age of six. Are they allowed to join us?
Absolutely! We will not have designated childcare for kids under 6 years old, but you are welcome to bring small children. We suggest having an extra adult attend with you, if possible, to help with small children.