The Marfan Blog

#VictoryToday

Posted by The Marfan Foundation Dec 2, 2019

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On December 3, the entire world will be participating in Giving Tuesday. Many people with Marfan and related conditions are supporting The Marfan Foundation because of our impact on their lives. Liam, Peter, and Katie share how the Foundation is helping them achieve #VictoryToday.

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I’m Liam. I’m 20, but I basically grew up when I was 11 and my doctor told me that I have Marfan syndrome.

I went home and Googled Marfan (because I’d never heard of it before) and everything I found said I’d live until I was 30 and that was about it. I’ll be honest. This was pretty depressing.

But, when I was 15, I found The Marfan Foundation and started experiencing life with Marfan syndrome in a totally different way.

I learned about advanced research that had pushed the average life expectancy to somewhere in the range of a typical adult. I met a community of people who support me and I got involved with Foundation programs that have improved my outlook and quality of life.

Just one example – I will never forget my first year at Camp Victory. I climbed a rock wall (safely, and with assistance designed just for people with Marfan and related conditions) and everyone started applauding.

I’d never before been able to tackle an obstacle like that. I got to overcome something that I wouldn’t have even gotten a chance to try anywhere else. That feeling will stick with me forever.

That’s one of my victories. That’s the kind of moment you create when you support The Marfan Foundation.

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I’m Peter. I’m 24. I’m a fan of all things Boston. And I live with Loeys-Dietz syndrome.

I’m also a walking testament for Marfan research.

Without medical advancements and research, Loeys-Dietz wouldn’t have been discovered and the things I need to know about my condition wouldn’t have been figured out.

Everything from the treatments I use to the activities I do is impacted by research and progress that was made before I was even diagnosed.

In my volunteer work with the Foundation, I spend a lot of time with the teens in our community. I do it because I want to make sure they are supported and connected as they figure out what victory looks like for them. I want to help them achieve #VictoryToday. Support for the Foundation makes these victories possible.

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Howell team

Katie Howell lives in Greensboro, North Carolina. She and her family are avid University of North Carolina fans, but they have a soft spot for rival, Duke, after Katie’s husband, Brian, received life-saving treatment there.

Brian and his two adult children are affected by Marfan. Together, they co-chair the Foundation's North Carolina Walk for Victory.

Why?

Because I want my kids to have less invasive procedures,” says Katie. “As a mom, who helps organize the Marfan care for my husband and kids, that would be my victory.”

The path to #VictoryToday for Katie, and moms like her, goes straight through research and progress. It goes straight through The Marfan Foundation.

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We hope you will join Liam, Peter, and Katie and support The Marfan Foundation on Giving Tuesday. You can do so at Marfan.org/GivingTuesday19.

Together, we can create #VictoryToday.

The Marfan Foundation creates a brighter future for everyone living with Marfan syndrome and related disorders.

Topics: Marfan Awareness, Marfan Community, Living Successfully, Education, giving tuesday

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