The Foundation

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.

Almost four years later, in early 2015, 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.  We have given presentations at Grand Rounds in various hospitals.  We have created a medical presentation and the “Head-to-Toe” checklist that we have presented to over 1300 medical professionals from around the world.  We have also hosted networking dinners and cocktails for medical professionals to learn about LDS, thus creating an informal network of “LDS Champions”.

Consequently, Canadian medical professionals and patients participated in two LDSF sponsored conferences in Baltimore.

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 a 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.

Fundraising Endeavours:

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.  In 2014 we have raised $34,858 in financial donations.

Our Priorities for 2015-2016:

  • 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 and newsletter content and translation.
  • Grant Program for Young Medical Professionals
    We are currently working with a group of volunteers to establish this grant.
  • 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!