The Walk has been instrumental for our family in making connections with the local Marfan community here in Ohio. The Walk has also given us a great excuse to get together with family and friends and spread awareness about connective tissue disorders. I am really proud of the work we have done to help fund critical research projects and continue spreading awareness of Marfan syndrome and related disorders.

We first got involved with the Walk for Victory because of the unknown. If Marfan was going to be something we were going to have in our lives, we wanted to know more about it and meet other people who were living with it. Now, we want to help other people learn and connect. Living with Marfan or a related condition can be a daily struggle. You can see it on their faces. But then you also see the relief when they realize they aren’t alone and are surrounded by others who understand.

I loved being with the group, just walking and feeling the sense of connection with everyone there. We shared stories and laughed and cried together. It was an amazing day.

We met families in our stage of life who have a lot in common with us, which is especially important when you have really intense things in your life… While we wanted to be connected with others, we also wanted to support the Foundation, including its research program. It’s the only way we’ll be able to increase the quality of life for people affected by Marfan, Loeys-Dietz, and VEDS.

It’s wonderful to see so many people come out and support people with Marfan syndrome and related conditions and their loved ones. These local Walks are so important to spreading awareness and providing a sense of community. I can’t wait to see everyone at our next Walk for Victory. I can’t wait to be involved with the community and help make an impact locally.