Why I’m Raising Money for Aortic Research

by Morgan Story

I was diagnosed in my mid-twenties with Marfan Syndrome and it was a steep learning curve for me and my family. It was apparent that very few people were aware of the condition. I wanted to spread awareness, educate people, and maybe help others get diagnosed and find support.

In order to cope with Marfan Syndrome, I have found the best way is to keep connected and involved in the GADA community. GADA shares information that helps me stay informed, and I use this information to educate others.

I held in-person GADA fundraisers in 2019 and 2020 and virtually in 2021. These events are to raise funds and awareness for Marfan Syndrome. Local businesses, family, and friends donate gifts for raffle prizes and we sell tickets to the day of event. The event itself consists of the raffle, food and beverages, a presentation about Marfan Syndrome, and me sharing my personal story.

I’m planning the next fundraiser for February 2023. It will be in-person and in a new location that I hope will drive a larger crowd. The more people, the better! We will continue to solicit the community for raffle prizes and spread the word in any way we can.

My hope is to drive more support for these diseases, specifically for Marfan Syndrome, so we are better prepared to help people. Research and education are key to building a stronger community.

If you want to run your own fundraiser, plan early, involve your family and friends, and use the GADA resources and social media for educational information. Don’t be afraid to reach out to businesses for donations for a raffle, but also go prepared to inform them of the cause and its importance. Even if you have a supportive network of people, finding people who are going through a similar journey and have that level of understanding is key. Keep talking and spreading awareness. You are important!

About Morgan: 

Morgan was born in Edmonton, Alberta, and grew up in London and Mississauga, Ontario. She is the founder and owner of Karma Yoga Studio. She practices reiki and tarot and enjoys hiking, being outdoors. reading, and spending time with her family, friends, and dogs.

Your donation helps us continue supporting important aortic research. GADA directly supports the expansion of Aortopathy patient registries like the Montalcino Aortic Consortium (MAC), which makes aortic research possible for improving treatment and management guidelines of different genetic aortic disorders.

GADA funds and administers MAC, an international collaboration of clinicians working to drive gene-based precision medicine of genetic aortic disorders through active research.

Help us in our mission to build a stronger community through our support for aortic research!