我们的使命
洛伊迪茨综合征(LDSF)致力于：
鼓励对医学专业人士和非专业人士进行有关洛伊迪茨综合征和相关结缔组织疾病的教育，以帮助识别、诊断和治疗洛伊迪茨综合征
开展关于洛伊迪茨综合征的研究
为受洛伊迪茨综合征影响的个人、父母和家庭提供支持网络
The Loeys-Dietz Syndrome Foundation is a division of The Marfan Foundation. Through this relationship, donations to the Loeys-Dietz Syndrome Foundation are tax-deductible and directly support our mission. You will receive a donation receipt from The Marfan Foundation.
我们的目的
我们的目的是提供有关什么是洛伊迪茨综合征（LDS）的信息，并为受此病影响的人们提供希望。我们希望通过我们的网站、时事通讯、社交媒体和其他资源，您将获得医疗信息和个人支持，以协助您和您的家人应对LDS。
我们努力为不断发展的受LDS影响的个人的全球社区提供服务。
有关我们的国际合作伙伴和会员组织的更多信息，请访问我们的合作伙伴和会员页面。
Our Strategic Advisory Board
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.
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.
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.
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.
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.
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.
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.
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.
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.
联合医疗咨询委员会 (MAC)
为了向国际医学界提供指导，LDSF和LDSF- canada已经建立了一个联合医疗咨询委员会(英文全称： Medical Advisory Council ； 简称：MAC)。该委员会的目标是为LDS基金会提供指导，以推进我们的共同使命，即鼓励LDS和相关结缔组织疾病的教育，促进研究并为受loeys - dietz综合征(LDS)影响的患者、家长和家庭提供支持。
由于LDS是一种多系统疾病，我们的目标是创建一个MAC，它具有来自各个子专科的医学表现，并结合相关的结缔组织专业知识。此外，我们正在建设一个具有国际视野和影响力的MAC。
LDS的咨询委员会（MAC）的委员包括:
Dr. Hal Dietz, Chair
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
MAC成员对基金会的责任包括:
支持和推进我们的使命
建立和提供LDS的医疗指南
审查由基金会创建的医疗资源
帮助审查基金会发起的研究项目
支持每一个基金会的研究经费申请
指导和培养未来LDS医学专业人员/研究人员的兴趣
基金会对MAC的责任包括:
通过病人招募、支持信等方式支持适当的研究活动。
以透明的形式提供教育、支持和研究策略
及时响应MAC的要求和需求
