09/08/2026
Please Join Team Morales or Donate to our team for the '26 Walk for Victory October 18, 11am-2pm at Forest Park Pavilion 11
give.marfan.org/TeamMorales2026
Why we want you to donate…
The Loeys-Dietz Foundation has been a great resource in helping us understand the condition that affected Ash and Carlos has. We did not find out about Loeys-Dietz Syndrome until after Ash’s passing in September 2023. Since then we have been able to connect and talk to others that have this condition and get the resources we need to make sure that Carlos can live with this and hopefully get ahead of any complications that may come later in life due to this condition.
Aside from monthly online support groups where Carlos can discuss any questions or concerns that we have about LDS, there are newsletters, the website loeysdietz.org, and a yearly conference (both in person and online) as resources for us to keep up with the latest information and discoveries for symptoms and ways to live with LDS.
In the summer of 2026, Carlos was able to volunteer his time and work as a Camp Counselor for Camp Victory that is not only for kids with LDS but also other connective tissue disorders such as Marfan Syndrome and Vascular Ehlers-Danlos Syndrome. It was great getting to spend time with children from ages 9 to 16 doing “normal” camp things like canoeing, climbing a rock wall, archery, swimming, and just being outdoors. For a lot of families with children affected with connective tissue disorders (CTD), they might not be comfortable sending their children away to a traditional camp that might not know how care for the specific limitations that this condition provides. With Camp Victory, everyone is volunteering knowing about life with CTD’s either because they have it, or know someone that does. There are also nurses that donate their time to come and are on call to make sure that any needs that arise are taken care of by people familiar with CTD’s. There are two kids summer camps: one in Georgia and another in California. They also have two family camps other times of the year at the same locations. The camps are provided free of charge to the kids and families due to donations.
