Support - Research - Education

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Mission:
CLOVES Syndrome Community supports, educates, empowers and improves the lives of those affected by CLOVES Syndrome.

Vision:
An improved quality of life for people with CLOVES Syndrome

Goals:

Provide information and resources to educate others about CLOVES Syndrome Foster and promote a supportive community Build and sustain a broad base of funding sources to support our mission and goals Utilize incoming funds to provide financial assistance to those impacted by CLOVES Syndrome Participate in and promote CLOVES Syndrome research to assist in a complete understanding of the disease.

2019 Year In Review

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Brenda J. Alexander
Secretary, CLOVES Syndrome Community

Brenda joined CLOVES Syndrome Community online before it became a formal organization in the summer of 2011.  In March 2011, Brenda became more actively involved in the CLOVES community through the first CLOVES family conference held at Children’s Hospital Boston. Brenda is a certified Elementary and Special Needs Teacher. She previously worked in public elementary schools in Massachusetts as a Special Education Teacher with young students identified with learning disabilities. Currently, Brenda sits on her local school committee as its vice-chairperson. Brenda has lived in Massachusetts and Maine with her husband John, daughter Callie, and son Ben.

Joe Barclay
Board Member, CLOVES Syndrome Community

Joe joined CLOVES Syndrome Community in October 2019. With 16 years of business management experience, Joe has helped build industry leading renewable energy firms. Joe is currently Chief Operating Officer at Greenlight Energy Group, LLC, the first WBE-certified renewable energy provider in the U.S., and founder and CEO of Orion Renewable Energy Trading Group LLC, the largest provider of renewable energy certificates to the Federal government. Joe has also held senior management positions with leading global renewable energy and carbon market firms. Joe brings his dedication and passion for growing businesses to CLOVES Syndrome Community and lives in Brooklyn with his partner Kelly and her daughter Grace.

Emily Burgess
Vice Chair of the Board, CLOVES Syndrome Community

Emily's daughter Anna Grace (10) was diagnosed with CLOVES at the HVMC at Cincinatti Children's Hospital.  During this time, Emily and her husband Adam, found CLOVES Syndrome Community, and became interested in advocating for their daughter. Emily is a graduate of Limestone College with a degree in Psychology.  Emily served on the CLOVES Syndrome Community Family Advisory Council before becoming a Board Member.  Anna Grace and her younger sister, Emma enjoy dancing and keeping their parents busy! A stay at home mom, Emily enjoys being home while her kids are small and she teaches dance classes a few days a week.

Alice Fuisz
Board Member, CLOVES Syndrome Community

Alice Fuisz joined the CLOVES Syndrome Community Board in December 2019. Alice’s son was treated for a lymphatic malformation at Boston Children’s Hospital when he was an infant, but the term CLOVES did not exist until he was a teenager. Alice, her husband Tony, and son have been attending the CLOVES Syndrome Family Conference since 2012. Alice recalls how important it felt for her son to be able to meet other teenagers with CLOVES and for she and her husband to talk with other parents. They all find the community to be a vital link to others dealing with CLOVES and a great way to keep up to date on scientific developments. Alice is a practicing general internist and a managing partner of Washington Internists Group, a small private internal medicine group in Washington D.C.

Kristen Davis
Chair of Board of Directors
Executive Director of CLOVES Syndrome Community

Kristen founded the CLOVES Syndrome Community website in 2009, after her daughter Riley was diagnosed with CLOVES. At that time, no organization existed to support families and people living with this rare disease.  CSC became a non-profit organization in July 2011.  Kristen is an advocate for people living with rare diseases and chronic illnesses and enjoys collaborating with other organizations, researchers, clinicians and providers.   Her educational background is in Social work, Social justice and English. Past volunteer roles include Advisory Committee submissions reviewer for the Rare Children’s Storybook Project and Member of the Children's Hospital Boston Family Advisory Council (FAC).  

She represents CLOVES Syndrome Community as a National Organization of Rare Disorders (NORD) Member Organization, as a member of the Global Genes Foundation Alliance and as a particpating member of The American Society of Pediatric Hematology/Oncology Vascular Anomalies Special Interest Group (ASPHO-VAC SIG).

Kristen lives in Maine, with her husband Marc Cerabona.  She has a college aged son Cole and daughter Riley. 

Lindsey Godar
Board Member, CLOVES Syndrome Community

Lindsey is from St. Louis Missouri and has two sons Austin and Zack .  She connected with the CLOVES Community in 2013 when doctors suggested that Austin (originally diagnosed at birth with KTS) may in fact have CLOVES Syndrome.  After biopsies and reviewing all of Austin’s records, doctors at Boston Childrens Hospital confirmed his new diagnosis of CLOVES.

Lindsey is a senior sales representative for a distributor of packaging and shipping supplies called Tripack.  She’s worked at Tripack for the last 17 years and also assists in the purchasing for the company.  When she isn’t selling boxes she enjoys spending time with her boys.  Zack plays select baseball and their summers are mostly spent at the ball fields.  She has been advocating on behalf of her rare gem for many years now and is excited for the opportunity to do even more with CLOVES Syndrome Community.  

Ashley McNamara
Treasurer, CLOVES Syndrome Community

Ashley joined CLOVES Syndrome Community during the process of becoming a formal organization in the summer of 2011.   Ashley is a Certified Public Accountant.  She has held various accounting positions and currently works full time as a Financial Reporting Manager for an oil and gas company.  Ashley lives in Tulsa, Oklahoma with her husband Steve and children, Loretta and Van.

Sara Robertson
Board Member, CLOVES Syndrome Community

Sara is from Austin, TX and joined the CSC board in October 2019. The CLOVES community has played a crucial role in her family’s lives ever since they were told “I think your son has CLOVES, the good news is there’s a very strong community.” Sara’s hope is that everyone with a rare disease can find strength and support in a community for them.  Sara is Senior Vice President, production at Austin PBS and an active member of her community. Her most cherished role is as partner to husband Jeremy and mom to their children Sebastian and Ryder.

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Our goal is to provide you with the most up to date, comprehensive and accurate medical information related to CLOVES Syndrome.

All medical material on this website is developed with oversight and direction from CLOVES Syndrome Community’s Scientific and Medical Advisory Board (SMAB). 

 

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Lauren Beauregard

Lauren lives in the Pacific Northwest with her husband, two kiddos, and a very feisty cat named Calliope. She became involved with CLOVES Syndrome Community shortly after the birth of her daughter, Kiki, in 2015. Lauren is the author of Four Leaf Clovers, a book about life with differences for young children written in collaboration with CLOVES Syndrome Community. When she's not busy with mom life, she publishes adult fiction under the name Elle Beauregard.

Robynn Kuhns

Robynn lives in Colorado with her husband and daughter Ellena, who was born with CLOVES in 2007.  She is a stay at home mom who has been fundraising yearly for CLOVES, with Ellena, and their Loaves for CLOVES event.  The CLOVES Syndrome Community has been a great place for them to funnel their interest in helping others with CLOVES.

Jennifer Padilla

Jenny Padilla is currently a stay at home mom, but was previously a NICU nurse. Her son Victor is almost six years old. She was able to attend the conference in Boston, when Victor was just 6 months old and was amazed to meet other children, teens and an adult with CLOVES. Jenny quickly realized that she could help support the organization through fundraising and by raising awareness. Jenny has organized many small and large fundraisers and has been a great resource for other families who want to participate that way.  Jenny says that her family has used CLOVES Community at times when they needed emotional support or help navigating life with a sick child. Jenny says that she couldn’t imagine life without this wonderful community, and their support towards all involved. This is the primary reason she has chosen to join the Family Advisory Council.

Lindsay Passodelis

Diagnosed with CLOVES at age 14, Lindsay has been involved with CLOVES Syndrome Community ever since.  Now several months out from graduating from the University of Pittsburgh, she works as a Medical Social Worker in Pittsburgh, PA. Lindsay is dedicated to spreading awareness about CLOVES and advocating for this syndrome and for those affected.  She is dedicated to making connections with other patients and families and values the relationships made within CLOVES Syndrome Community.   

Learn more about the Family Advisory Council here.

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We're part of the Chan Zuckerberg Initiative's Rare As One Network — a group of 30 patient-led organizations that are accelerating research and driving progress in the fight against rare diseases.

The Chan Zuckerberg Initiative's Rare As One Project aims to strengthen the efforts of patient-led groups. It will help communities of patients, researchers, and clinicians work together to advance progress against their diseases and scale these efforts. Working in partnership with the rare disease community, the Rare As One Project will create shared infrastructure to lower the barriers to patient-led research and enable patient communities to learn from one another.  No one is more motivated than patients to drive progress against their disease. We're proud to be creating a patient-led research network to accelerate research and find treatment options for people with CLOVES and PIK3CA Related Conditions.

CLOVES Syndrome Community, in collaboration with Dr. Denise Adams of Children's Hospital of Philadelphia, Dr. Jean Zhao of Dana-Farber Cancer Institute and Dr. Miikka Vikkula, Co-Director of de Duve Institute, is planning a virtual International Scientific Meeting for PIK3CA related conditions.   We will meet virtually on Thursday October 28 and Friday October 29, 2021 from 9am - 2pm EST.  Please sign up here to receive information about registration process, abstract submission timeline and agenda.

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Program Assistant Position closed - March 30, 2020

Our nonprofit organization is hiring a highly organized and motivated Program Assistant to support the work and programs of CLOVES Syndrome Community (CSC).

Program Assistant Responsibilities:

The Program Assistant provides operational and administrative support to the Executive Director. The Program Assistant performs a variety of logistical, administrative and coordination services for CSC including:

• Creating Social Media posts and management
• Updating website
• Maintaining records
• Answering emails
• Donor support and management
• Creating newsletter posts
• Creating reports
• Maintaining tracking systems for CSC Programs
• Maintaining and updating database
• Coordinating translation, proofing and editing of documents
• Supporting virtual and in person events
• Project and program support related to the development of CLOVES & PROS Collaborative Research Network

Work Hours and Details:
This is a six-month contract position, for 12 hours a week, with the option to extend for additional time at the end of six months. We're looking for someone who is available three days a week and for occasional evening meetings. Remote contractors are encouraged to apply.

Program Assistant Skills and Qualifications:

Solid writing skills Highly organized Great attention to detail Communicates effectively via phone and email Knowledge of MS Office Suite Knowledge of Google Suite Familiarity with social media platforms Familiarity with project management software

Starting hourly wage is $17 USD an hour. Compensation commensurate with experience.

To apply, send cover letter and resume by Monday March 30th

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