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Biennial Family Conference

 Saturday June 8, 2019 is our next CLOVES Family Conference

at Boston Children's Hospital

Our 5th CLOVES Family Conference runs from 9am - 4:30pm on Saturday June 8, 2019.

Early bird registration is open now!     REGISTER here.  

We will update details about the Conference on this page, as they are finalized.

Learn how to sponsor our conference! 

 

Confirmed presenters for our 5th CLOVES Family Conference include:

              

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

 

Registration Details:

****Any CLOVES family or person with CLOVES who needs a partial or full conference registration scholarship will be granted one.  Please email us at info@clovessyndrome.org to attain the discount code for registration BEFORE you register*****

Early Bird registration is $25 per adult and $10 per child from 11/19/18 - 1/20/19

Regular registration is available for $40 per adult and $20 per child from 1/21/19 - 4/1/19

LATE registration is available for $60 per adult and $30 per child from 4/2/19 - 4/26/19

Registration closes on April 26, 2019 or sooner if we reach capacity.

If you need to cancel your conference registration for any reason, and do so by April 1, 2019, we are able to offer you a full refund - minus processing fees - for your conference registration.  If you need to cancel your registration after April 2nd, 2019, we are not able to offer you a registration refund.  

 

Conference Activities for Kids and Teens:

Activities for children ages 5-12 and teens will be provided by Zebra Crossings with support from Boston Children’s Hospital Child Life Services staff/volunteers.  Children younger than 5 years of age must be with a caregiver/volunteer in the kids room.  Please bring an additional adult, if need be, if you are bringing children younger than 5 years. 

 

CLOVES Conference Hotel Block:

We have a LIMITED number of rooms available at the DoubleTree Boston Downtown from Thursday June 6 through Sunday June 10, 2019 for $259 a night.  

You must use this link to register  for a room at the DoubleTree Boston.  Our group code is CLV.  

The DoubleTree Boston Downtown is located in the heart of the Theater District, is close to the Orange Line and is located just a few miles from our conference location of Boston Children's Hospital.  Pool and fitness facilities will be available to our hotel guests at the Wang YMCA next to the DoubleTree.  

Hotels in Boston in the summer are often expensive and hard to find.  We recommend reserving a room at the DoubleTree Boston Downtown, or an alternate location, as soon as you've registered for the conference.

 

CLOVES Family Dinner on Friday June 7, 2019:

Join us for our CLOVES Family Dinner  at the DoubleTree Boston Downtown on Friday June 7th from 5-8pm.  You can register here for the Family Dinner, once you've registered for the conference.  

Salad, main course, dessert and soda/water are included in the price of your meal.  A cash bar will be available for those who are interested.

Pricing info is below:
Adult dinner price (age 13 years and up)  - $20 per person

Kids dinner price ( age 3-13 years)  - $8 per person

Babies (age 0-3 years) - Free

Family Dinner registration closes on MONDAY APRIL 1, 2019.  If you need to cancel your Family Dinner registration for any reason, we can provide a full refund -  minus Paypal fees -  until April 26,  2019. 

If you need to cancel your dinner registration after April 27, 2019 we are unable to offer you a refund.  

 

Vascular Anomalies Center appointments at Boston Children's Hospital:

There will be a limited number of appointment slots at the Boston Children's Hospital VAC  on Friday June 7th for new and returning patients. 

Appointments can be requested after January 2, 2019 by calling 617-355-5226.  You must register for the conference before you can claim one of the VAC appointment spots.  

 

Limited Conference Travel Scholarships:

Applications for conference travel scholarships will be open from Wednesday January 23 - Wednesday February 20, 2019.  Award letters will be emailed out by the week of March 11, 2019.

You must register for the conference before you can apply for a travel scholarship.  

A link to the scholarship application will be posted here on 1/23/19.  

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