We are among the lucky ones

Marfan syndrome. I never heard of it either until my son, Owen, was diagnosed with the potentially fatal genetic disorder in 2014, when he was 13 years old. We are among the lucky ones. About 200,000 people in the U.S. have Marfan or a related disorder, but half are not diagnosed. Without a diagnosis and treatment, they are at risk of a sudden early death from a tear in their aorta.

When Owen was diagnosed, we connected quickly with The Marfan Foundation. Not only to become educated and empowered, but also to get involved and help make sure other families would not be at risk. So their loved ones would also be diagnosed and treated. The alternative is just not acceptable.

Two years after my son’s diagnosis, I can share that The Marfan Foundation has directly impacted our lives in our suburb outside of Houston in more ways than I can count. Its impact has been enormous and life-saving. I am also proud that we, as a family, have done our part to raise awareness about the signs of Marfan and raise funds for the Foundation’s life-saving programs and services.

Through the Foundation’s local community groups and social media, we got connected to a large community of people with Marfan and related disorders from around the country and in Houston. As a result, we know we are not alone on this complicated medical journey. We were proud to serve as volunteer chair of the Foundation’s first Walk for Victory in Houston in February 2016 and raise nearly $140,000 (the Foundation’s largest walk to date). 

Through the Foundation’s Annual Conference, we met the leading doctors and researchers on Marfan and related disorders and became educated about the recommended treatments. As a result, when Owen needed aortic surgery just before his 15^th birthday, we knew where to find a leading Marfan surgeon (who was right in Houston!) and get the best results. We chronicled Owen’s surgery all over social media and shared our story in the Foundation’s Connective Issues to help other families who face this scary surgery.

Through the Foundation’s legislative initiatives, we had the opportunity to educate Congressional representatives on Capitol Hill about the signs of Marfan syndrome and how more young people can be diagnosed through better athlete screening programs. 

We support The Marfan Foundation because they are the leading organization that provides education and support and funds research on Marfan syndrome and related disorders. They care about all the Owens of the world and are determined to create a brighter future for every one of them.

About the Marfan Foundation

The Marfan Foundation creates a brighter future for everyone affected by Marfan syndrome and related disorders by:

• Pursuing the most innovative research and making sure that it receives proper funding
• Creating an informed public and educated patient community to increase early diagnosis and ensuring life-saving treatment
• Providing relentless support to families, caregivers, and healthcare providers

We will not rest until we’ve achieved victory—a world in which everyone with Marfan syndrome or a related disorder receives a proper diagnosis, gets the necessary treatment, and lives a long and full life.

Our thanks to Rod and The Marfan Foundation for sharing their story and impact with us.  You can learn more about their work by visiting their website www.marfan.org. To support their work, please donate to The Marfan Foundation through your company’s workplace giving program. If your company would like to start a workplace giving program to support nonprofits like The Marfan Foundation, click here. We have a portfolio of solutions designed to help large and small organizations give back to the causes they care about.