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December 2021 - Meet Our Volunteers

Meet Emma:

"I started volunteering for the LDSFC in April of 2021. I wanted to work with them because I have LDS and wanted to learn more about it. I was interested how data is being researched and collected. For the first few months I found researchers’ contact information and more recently I began working in Salesforce inputting that data into the system."

Meet Heather:

“My background is in Fashion Marketing and most recently working in Finance. I am starting my eighth year as part of the PENTOR Finance team who has been a continuous partner and supporter of Loeys-Dietz Syndrome Foundation Canada.

I first became aware of Loeys-Dietz Syndrome when my friends’ son was diagnosed with this rare disease. Sometime later, this brought me to be involved in the foundation with the intention to do my part and help however I could.

For eight years, I have volunteered my time to the foundation in an administrative capacity including handling all the bank responsibilities and processing of all donations. I also worked on the design and distribution of the promotional swag material. It continues to be a privilege to be part of Loeys-Dietz Syndrome Foundation Canada and look forward to Jida and the rest of the team collectively connecting the dots into the next era."

Meet Julie:

"In January of 2020 I reached out to the LDSFC after reading online that they were looking for volunteers to work on their new research database.  This would contain articles and research relating to Loeys-Dietz Syndrome.  I jumped at the chance as my daughter Emma was diagnosed with LDS at the age of 8 by Dr. Dietz. I have a background in publishing media research and gathering data, so it seemed like a perfect fit for me.   I loved the idea of being able to contribute to the foundation in any way I could.  Since that first day, I have collected hundreds of research articles related to LDS for the database.  It has been a pleasure watching it grow and expand to include additional research that will benefit those living with LDS."

Meet Justin:

“I became aware of the foundation due to family members being directly affected by LDS. I am currently working towards completing my undergrad at McGill University and I help the foundation by contributing to the database for the GRIP project.”

Meet Alex:

“At different times over the past decade, I have been responsible for newsletters, social media, translations, communications, community relations, volunteers, fundraising support, community education, and resource development. I have also been involved in recognizing donors, educating healthcare professionals, organizing events, raising funds for the foundation, and in the Foundation’s rebranding.”