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 About the Loeys-Dietz Syndrome Foundation

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Our Mission

The Loeys-Dietz Syndrome Foundation (LDSF) is dedicated to:

  • encouraging education about Loeys-Dietz syndrome and related connective tissue disorders to medical professionals and lay communities in order to aid in identification, diagnosis, and treatment of Loeys-Dietz syndrome

  • fostering research about Loeys-Dietz syndrome 

  • providing a support network for individuals, parents, and families affected by Loeys-Dietz syndrome

Strong City Baltimore (EIN # 52-0897806) is pleased to serve as the Fiscal Sponsor for  Loeys-Dietz Syndrome Foundation.  Through this fiscal sponsorship relationship, LDSF is able to receive tax-deductible contributions, including in-kind, grant awards, and financial contributions in support of its work.

 

 
 

Our Purpose

Our purpose is to provide information about what Loeys-Dietz syndrome (LDS) is and to provide hope for those impacted by the condition. We hope that through our website, newsletter, social media outlets and other resources, you will find medical information and personal support to assist you and your family on your journey with LDS.

We strive to serve a growing global community of individuals impacted by LDS.

For more information about our international partners and affiliate organizations, please visit our Partners & Affiliates page. 

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Our Board of Directors


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Dawn G. Reiner

President
dawn.reiner@loeysdietz.org

Dawn lives in Los Angeles, California with her husband, Andrew, and two children. Their daughter, Nicole, has LDS. Dawn founded a non-profit organization focused on children with special needs, has served on several boards and is currently the director of marketing and business development for a retail maintenance company.  She holds an undergraduate degree in marketing and graduate degree in education. She joined the Board in 2014, co-chaired the 2018 conference and chaired the 2016 conference.

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Gretchen (Oswald) MacCarrick

Past President and Co-Founder, Educational Committee Chair
gretchen.maccarrick@loeysdietz.org

Gretchen lives in Towson, Maryland with her husband, Jacob.  She is a genetic counselor at the Johns Hopkins University in Baltimore, Maryland working primarily with individuals diagnosed with LDS and other connective tissue disorders.  She holds an undergraduate degree in biology. She is a co-founder of the LDSF, past president, and has served on the Board since 2007.

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Julie Wilson

Vice President - Conference Committee Co-Chair
julie.wilson@loeysdietz.org

Julie lives in Weirton, West Virginia with her husband Chris and their son Connor, who has LDS.  Julie works as a digital marketing quality assurance team lead for a global information technology consulting company in Pittsburgh, PA. She co-chaired the 2018 conference, a 2016 conference committee member and joined the board in 2016.

 
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Gabriel W. McCauley

Marketing Committee Co-Chair
gabe.mccauley@loeysdietz.org

Gabe lives in Columbia, Tennessee with his wife, Mandy, and two children. Their oldest child, Scout, has LDS.  Gabe owns and manages a film production company. He holds an undergraduate degree in Electronic Media. He joined the LDSF Board in 2014.

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Susan M. Lawrence

Conference Committee Co-Chair
sue.lawrence@loeysdietz.org

Sue lives in Warren, New Jersey with her husband, Christopher, and three children. Their middle child, Alexa, has LDS.  Sue has worked in financial services for over 20 years. She holds an undergraduate degree in international business. Sue co-chaired the 2018 conference and has been an active fundraiser for the LDSF and joined the Board in 2015.

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Heide Padilla

Development Committee Co-Chair
heide.padila@loeysdietz.org

Heide Padilla lives in Chicago, Illinois with her husband, Germaine, and her four boys.  As a result of a spontaneous mutation, her son Noah has LDS. Heide is a primary teacher and has worked in the Chicago Public School system for the past 16 years.  She holds a bachelor's degree in Early Childhood Education and a master’s degree in Curriculum and Instruction. Heide has been an active fundraiser for the LDSF and joined the Board in 2017.

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Jennie Moore Bange

Conference Committee Co-Chair
jennie.bange@loeysdietz.org

Jennie lives in Elm Grove, Louisiana with her daughter Caroline who has LDS. Jennie has an undergraduate degree in family and child studies and a masters in occupational therapy. Jennie works as an occupational therapist for a company she founded and manages. She joined the board in 2018 and co-chaired the 2018 conference.

 
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Linda Tigges

Outreach Committee Co-Chair
linda.tigges@loeysdietz.org

Linda lives in Raleigh, North Carolina with her husband David and two children. Her daughter Kayley has LDS. She attended University of North Carolina for undergraduate and law school. Linda works as the General Counsel, Data Center Group for Lenovo. Linda joined the board in 2018.

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Kristy Moser

Co-Chair Outreach Committee
kristy.moser@loeysdietz.org

Kristy lives in Mason Ohio with her husband Joe and their three sons. Their son Wyatt has LDS. She holds an undergraduate degree from Xavier University, a masters in religious studies and pastoral leadership and family studies from Cincinnati Christian University. Kristy works as the Care Pastor at Montgomery Community Church. She joined the board in 2019.

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Lauren Atherton

Marketing Committee Co-Chair
lauren.atherton@loeysdietz.org

Lauren lives in Denver, Colorado with her husband, Brett. She holds a bachelor’s degree in fine art and owns a design agency that helps nonprofits and foundations create compelling brands. Lauren was diagnosed with Loeys-Dietz Syndrome in 2017 and joined the LDSF board in 2019.

 

Medical Advisory Council (MAC)

In order to provide guidance to the medical community internationally, the LDSF and LDSF-Canada have worked to create a joint Medical Advisory Council (MAC). The objective of this Council is to provide guidance to the Foundations in order to further our common mission of encouraging education about LDS and related connective tissue disorders, fostering researchand providing support for patients, parents and families impacted by Loeys-Dietz syndrome (LDS).

Since LDS is a multisystem disorder, our objective was to create a MAC with medical representation from the various subspecialties coupled with relevant connective tissue expertise. In addition, we are building one MAC that will have international scope and reach.

 

The members of our MAC include:


Dr. Hal DietzChair
Genetics/Cardiology
Johns Hopkins University, USA


Dr. James Black
Vascular Surgery
Johns Hopkins University, USA


Dr. Ismail El-Hamamsy
Cardiovascular Surgery
Montreal Heart Institute, Canada


Dr. Pamela Frischmeyer-Guerrerio
Chief, Food Allergy Research Unit
National Institute of Health, USA

 

Dr. Anthony Guerrerio
Pediatric Gastroenterology
Johns Hopkins University, USA


Dr. Bart Loeys
Genetics
University of Antwerp, Belgium


Dr. Paul Sponseller
Pediatric Orthopedics
Johns Hopkins University, USA 

 

Responsibilities of MAC members to the Foundations include:

  • Support and advance our mission

  • Create and provide ongoing review of medical guidelines for LDS

  • Review medical resources created by the Foundations

  • Help review Foundation-initiated research projects

  • Support each Foundation with respect to potential research grant applications

  • Mentor and foster interest in future generations of medical professionals/researchers in LDS

Responsibilities of the Foundations to the MAC include:

  • Support appropriate research initiatives through patient recruitment, letters-of-support, etc.

  • Provide education, support and research strategies in a transparent format

  • Provide timely responses to the MAC’s requests and needs

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The Loeys-Dietz Syndrome Foundation 2018 Annual Report

We have accomplished so much this year, and are so proud of the strides our foundation has made in education, connection, and research.

 
 
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