Our Impact

LDSFC is a catalyst for change. We are proud to be creating a positive impact in the communities working and living with Loeys-Dietz syndrome (LDS). The Foundation’s impact spans across areas of research, awareness and education, and support for patients and families. 

Our Research

Through research, we uncover new and improved ways to diagnose, treat, and manage Loeys-Dietz syndrome. 

Through the LDS Emergence Acceleration Program (LEAP) Impact Award, LDSFC supports and funds essential and innovative LDS research.

 

In 2022, we funded four projects that are investigating a wide range of topics related to Loeys-Dietz syndrome: the effects of exercise, psychological and socioeconomic impact, molecular biology of bone malformation, and the power of MRI imaging. Each awardee receives a seed funding grant of $25,000 USD, leadership development coaching, and access to our global network of resources.

 

Our goal is to identify, fund, and support investigators in order to encourage them to take a leap into Loeys-Dietz syndrome research. The LEAP Impact Award has the power to promote LDS research that also sheds light on other connective tissue and heritable aortic disorders, and to support LDS researchers as they progress to receiving larger grants and creating greater impacts.

 

To learn more about LEAP, visit our page for researchers.

The Global Research Inventory Program (GRIP) is a one-of-a-kind inventory of research published on Loeys-Dietz syndrome. Our global database hosts over 1300 relevant, categorized research articles as well as information on the articles’ investigators.

 

The GRIP database enables us to communicate our LEAP Impact Award funding opportunity to a global cohort of LDS researchers and their contacts, and enables us to assist with LDS research by providing interested investigators with topic-specific research articles.

 

To maintain a comprehensive and up-to-date repository of articles, we rely on the generosity of our GRIP volunteers.

We are proud to be founding members of the CANadian Aortopathy and Connective Tissue (CAN-ACT) Registry. Our partners include the Canadian Congenital & Pediatric Cardiodology Research Network, McGill University Health Centre, Dr. Frédéric Dallaire, Dr. Tiscar Cavallé-Garrido, and Dr. Tim Bradley.

This is the first Canadian registry for people with hereditary aortopathies and connective tissue disorders like Loeys-Dietz syndrome. The registry will be a secure, centralized collection of patient health data, including information on an individual’s genetics, cardiovascular and other symptoms, imaging, and medication.

Centralized patient information can help investigators identify research themes, foster collaborative research, and improve patient quality of life and longevity.  

Our Medical and Scientific Advisory Board (MSAB) provides expert advice and invaluable support to the Foundation.

Their input enriches our research programs and enables us to produce a greater, more sustainable impact in the LDS community.

Meet the members of our MSAB.

CLARITY (Collaborative for Longitudinal Aortic Research in The Young)  is a collaborative of hospitals with specialty centers for youth with hereditary thoracic aortic disease (HTAD).

 

Through research, CLARITY aims to optimize health outcomes in these patients. The collaborative currently consists of American institutions, and Canadians are not yet eligible to participate. LDSFC continues to support CLARITY with our available and relevant resources. 

Our Education and Awareness

Education and awareness are key to helping people receive an early and accurate diagnosis, access proper medical care, and live longer and better-quality lives.  

The Foundation has sponsored, presented at, and hosted various educational and awareness-raising events around the world, including conferences, hospital grand rounds, and networking dinners for medical professionals.

 

LDSFC is proud to be a partner and sponsor of the yearly Heritable Aortic Disorders (HAD) Symposium. The Symposium is a unique opportunity for patients, families, friends, and medical professionals to meet, connect, and learn about advances in the genetics, diagnosis, and management of heritable aortic disorders like Loeys-Dietz syndrome. The Symposium rotates between major Canadian cities with 2018 in Toronto, 2019 in Montreal, and 2023 in Halifax.  

The Foundation publishes regular educational materials in the form of monthly newsletters and blog articles, social media content, video interviews with the LDS community, updates to our website, a school packet, and a Head-to-Toe document of LDS features created in partnership with the Loeys-Dietz Syndrome Foundation. 

We believe that our efforts and impact are amplified when we partner with others. The Foundation is proud to raise awareness and promote education for LDS and related conditions alongside LDS community members, patient advocacy organizations, industry partners, and leading medical and academic institutions, both in Canada and around the world.

Our Support

LDSFC is honoured to support and advocate for the communities living and working with Loeys-Dietz syndrome. 

Our support for patients, families, and friends aims to help people with Loeys-Dietz syndrome live longer and better-quality lives.

 

We recognize that each person with LDS faces unique challenges at various stages of their diagnosis and life trajectory. Therefore, we provide individualized, emotional, and practical peer support, as well as access to our Resource Directory, a growing library of hundreds of medical, psychological, educational, financial, and other resources.

 

To date, we have assisted over 120 individuals and families from over 25 countries. If you are looking for help, please contact one of our trained professionals. 

Our support for medical professionals seeks to answer needs at the clinic and provider level.

 

We have helped Canadian clinics to expand their reach, patient services, and fundraising efforts, and have developed an innovative, multidisciplinary clinic model for treating and managing Loeys-Dietz syndrome. The clinic model is in practice at leading medical institutions, including St. Michael’s Hospital and the Montreal Heart Institute.

 

We have also identified, recruited, and supplied information to healthcare providers who take an active interest in LDS patients.

Meet the people behind our research, education and awareness, and support initiatives

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