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Biennial Family Conference

Our Biennial Family Conference is an opportunity for learning, connection and meeting with the world's leading CLOVES experts to hear about quality of life, treatment and living with CLOVES.  Our Family Conference is held in Boston and the next one is tentatively planned for 2021. 

Agenda from our 2019 Conference is here. 

The final date is dependent on meeting our fundraising goals. Sign up for our newsletter to receive notifications about the date and details of our next conference.

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

 

 

Our presenters for our June 2019 CLOVES Family Conference included:

              

Rick Guidotti of Positive Exposure  

Rick Guidotti, an award-winning photographer, has spent the past eighteen 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; his work has been published in newspapers, magazines and journals as diverse as Elle, GQ, People, the American Journal of Medical Genetics, The Lancet, Spirituality and Health, the Washington Post, Atlantic Monthly and LIFE Magazine.

Rick is the founder and director of Positive Exposure, an innovative arts, education and advocacy organization working with individuals living with genetic difference. Positive Exposure utilizes the visual arts to significantly impact the fields of genetics, mental health and human rights.

The Positive Exposure photographic exhibition premiered at the People’s Genome Celebration, June 2001, at the Smithsonian’s National Museum of Natural History and continues to exhibit in galleries, museums and public arenas internationally. Positive Exposure is the subject of critically acclaimed Kartemquin Film’s ON BEAUTY.  Positive Exposure’s powerful collection of imagery, film and narratives celebrates the richness and beauty of human diversity and dignity.

Learn more about Positive Exposure and Rick's work here.

Rick's TED Talk from 2012 

Dr. Guillaume Canaud, MD, PhD of Canaud Lab at Necker Hospital

Guillaume Canaud is a MD, PhD working in the Renal Division of Necker Hospital. He did his medical school in Montpellier and moved to Paris in 2002 to perform his Residency in Nephrology (2002 to 2007). He became Senior Resident in the Renal Division of Necker (Prof. Legendre) from 2007 to 2012. Concurrently, he spent four years from to 2008 to 2012 in the laboratory of Dr. Fabiola Terzi (INSERM U1151, Necker Hospital) to achieve his PhD degree in molecular and cellular biology. Then, he joined the Joseph Bonventre’s Laboratory (Harvard Medical School, Boston, USA) from 2012 to the end of 2013 to achieve a postdoc. He came back to Christophe Legendre’s team with a Faculty position (Associate Professor) and built his own group of research dedicated to translational medicine. He obtained the highly prestigious and very competitive European Research Council starting grant (2016) for his kidney research project and an ERC Proof of Concept Grant for his translational research (2017).

Very recently, Guillaume and his group, identified and reported in Nature a very promising therapeutic for patients with a rare genetic disorder called PIK3CA-Related Overgrowth Syndrome. He published as a first or last author in top leading medical and scientific journals such as Nature, The New England Journal of Medicine, Nature Medicine, Journal of The American Society of Nephrology or Kidney International. He received several awards including the 2018 Prize Jean Lecocq of the French Academy of Sciences. 

 

Dr. Denise Adams, MD | Boston Children's Hospital, Co-Director of the Vascular Anomalies Center

Dr. Adams is the Co-Director of the Vascular Anomalies Center at Boston Children's Hospital and is known for her exceptional care, monitoring and compassion for her very complex patients with vascular anomaly syndromes. 

Dr. Adams states that "Since my first high school biology class, I have wanted to be a physician and since residency my passion has been the care of chronically ill children. In fellowship, I found a new passion and goal, to care for children and adults with vascular anomalies.   This was a spectrum of diseases with limited and high morbidity that needed the care of physicians with keen interest in discovery to improve their outcome.  This is my mission."

Meet Dr. Adams through her Caregiver profile  at Boston Children's Hospital

"Ask the CLOVES Experts" panel 

Question and answer session between families, people with CLOVES and medical providers from Boston Children's Hospital.

                                                                      

What kids and families are saying about the CLOVES Family Conference:

"The CLOVES conference was everything I hoped it would be and more. I met a team of brilliant Doctors that know more about my condition than anyone ever has in my 50 years of life. I was learning from them for once rather than trying to explain to them what I have. While this is a very complex condition, I feel as though I have a better understanding of the how's and why's now. I am thrilled to have found answers and a possibility of improving my medical situation and longevity. The team of Doctors/researchers is truly amazing. I also loved meeting the children with CLOVES and talking with their parents. I have the unique opportunity to be "older" and can hopefully help some of the children and parents recognize that although this is a huge obstacle at times, we really can enjoy life and go on to do the things that are important to us as individuals. I have so much admiration for the parents that are working hard to find answers for their children."   - Adult with CLOVES Syndrome

"I made a new best friend here!" - Child with CLOVES

"Why did we travel to Boston? I came to connect my child to this team that has seen more people with CLOVES than anywhere else in the world. It was tremendously powerful to interact with such dedicated doctors and staff, and to know they are making progress. And we travelled to be among other families affected by CLOVES, and know that we have an understanding and support from our shared experience. I saw a lot of resilience and hope in that room. It's worth it for a connection that will help carry them through the hard times that come with CLOVES." - Mom of a child with CLOVES

"We just wanted to say you are all some of the tallest and strongest people we have ever met and thank you for making us part of your family.  We have learned so much. You all made us feel so welcome and just wanted to let you know no matter how hard the struggle may be, you are doing an amazing job.  Stand tall and stand firm.   Love from all of us." - Parents of a child with CLOVES

"This is more fun than our own summer camp!" - Child with CLOVES

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