In October 2010, the founding members sat around the Fratino’s dining-room table in Montreal to set the basis of LDSF-Canada. Our initial goals were to encourage education, foster research and provide support to patients and their families.
In June 2011, LDSF Canada obtained its charitable status from the Canada Revenue Agency, thus making donations tax deductible.
We are proud to have made incredible progress towards our initial goals. Some of our accomplishments include:
On the Education and Awareness Front:
In collaboration with our friends at the Loeys-Dietz Syndrome Foundation in the United States, we have participated in 17 events for medical professionals in Canada, the United States and Italy and have sponsored four conferences in Baltimore. We have given presentations at Grand Rounds in various hospitals. We have also hosted networking dinners and cocktails for medical professionals to learn about LDS, thus creating an informal network of “Medical Champions”. In collaboration with our champions, we have created a medical presentation and the “Head-to-Toe” diagnostic checklist that we have presented to over 1300 medical professionals from around the world.
The first annual Heritable Aortic Disorders Symposium (HAD) was held in 2018. HAD is an initiative led by 5 major Canadian universities and supported by LDSF Canada and GADA (Genetic Aortic Disorders Association Canada). This annual conference brings healthcare professionals working with and patients living with LDS and other Heritable Aortic Disorders together to learn, share and grow. The conference rotates between major Canadian cities with 2018 in Toronto, 2019 in Montreal, and 2021 in Halifax.
On the Support Front:
We have identified and recruited “Medical Champions” that have taken an active interest in Loeys-Dietz syndrome patients. We have developed an innovative model for multidisciplinary clinics that has been adopted by hospitals in Canada. We have helped existing clinics in Canada to expand their reach, patient services and fundraising efforts. We have assisted dozens of patients and their families in connecting them with the appropriate medical and support resources. In conjunction with our partners at the LDSF in the United States, we have created a Medical Advisory Council (MAC) and the framework for a patient registry.
On the Research Front:
We have worked with numerous researchers to identify resources to contribute to their research efforts.
The Global Research Inventory Program (GRIP) is a global inventory of research published on Loeys-Dietz syndrome. We have over 1300 articles in our one-of-a-kind database.
An exciting feature of the GRIP inventory is a record of medical professionals who have collaborated on published LDS research. This database will be instrumental in ensuring that LDSF Canada will have a comprehensive and global reach when it announces the Early Investigator Impact Award Program in 2021. The funding program aims to inspire, attract and retain the brightest minds in the world to research Loeys-Dietz syndrome and related disorders. The program will achieve this aim by providing seed grants, leadership development coaching and networking opportunities to early career investigators.
We have assembled a team of volunteers and academic partners to develop algorithms that will make our work as a foundation more efficient and effective. One such project uses artificial intelligence to expand the scope of our GRIP database by including research published on the genes in which mutations cause LDS. This project ensures that our GRIP database will continue to be a comprehensive resource to support, educate and promote further research in the LDS community.
LDSF Canada has supported patients and their families in their efforts to raise awareness and funds in their communities, to benefit the Foundation. For example, Sal’s Montreal Marathon, Joseph’s Gran Fondo NY, Alex’s Birthday Donation and his Valentine’s Day Cookie sale events, Tyler’s Birthday Donation, Cycle Paul’s Bike for LDS, Dominic’s Sales Team, Justin’s Bar-Mitzvah donation, the Loyola High School "Free Dress Day" event, and the President’s Year End Fundraising Campaign.
Our Priorities for 2021-2022:
Grassroots Fundraising Program
We want to engage the members of our LDS community in raising awareness and funds. If you would like to organize a fundraising event to benefit LDSF Canada, please contact us.
Volunteer Development Program
LDSF Canada needs you! We are currently looking for committed volunteers to help us with web site content and updates, social media updates, fundraising coaching, newsletter content, translation, and our Global Research Inventory Program.
Early Investigator Impact Award
We will be accepting applications in 2021.
Heritable Aortic Disorders Symposium
We will continue to support and participate in HAD 2021 in Halifax and future symposiums.
Board of Directors Expansion
Contact us if you are interested.
Patient Tools and Resources
A dedicated group of volunteers has been busy developing tools to empower our patients and their families. We are looking forward to introducing these tools soon!
The LDSF-Canada is currently searching for an Executive Director to help us achieve our strategic goals. View more information (PDF).