Costello Syndrome Family Network

06/14/2026

Luke and Octavio got to meet at Octavio's soccer game. This was the first time Octavio and his family had ever met another person with Costello syndrome!

06/07/2026

05/31/2026

After Hurricane Helene hit Western North Carolina, Jill lost her volunteer job at Camp Christmount in the kitchen but another door opened. She joined Mercy Chefs as a staff volunteer. The staff became like family and she found a place to be productive, feel needed, and have fun! She stocked supplies, chopped vegetables, labeled containers, made lots of salads, and went on deliveries. Mercy Chefs closed down the kitchen on Feb 27 and the manager moved to Virginia but they all stay in touch.

05/17/2026

Maggie is 30 years old and she moved to Colorado a few years ago with her parents to be near some of her siblings. She has always loved animals, especially horses. Shortly after she arrived at her new home, she was told about a wonderful organization called WindWalkers, which provides equine-assisted therapy to people of all ages and abilities. Maggie began by volunteering at the ranch, grooming some mini horses and cleaning out their stalls. She now rides weekly on a beautiful horse named VieGaits with her dear friend Zac. Maggie's strength and confidence continues to grow. Her riding days are her favorite!

05/03/2026

Ali has just completed her ninth year of dance and finds true joy in it. She began with Zumba, but her desire to perform in recitals led her to ballet. She is now in Ballet Level 2. Ali and her family are grateful to have found such an amazing and inclusive place to dance, and she looks forward to continuing to share her love of dance with others for as long as she can.

04/26/2026

Rocking the heart tees! Don't forget to buy yours today!

Order here https://www.bonfire.com/costello-syndrome-awareness-heart/

04/12/2026

Joey is a Freshman in high school this year. He was able to represent his school on the very first Adapted Bowling Team. His school did all the work to create the league and now other schools are begging to join! Not only does this give him the benefits of being able to participate in sports with his peers, but it also gave him the chance to earn his Varsity Letter. For those of you not aware, the Varsity Letter is something athletes strive to earn in the United States and is the symbol of representing your school in a meaningful way athletically. It is not just given to everyone who joins a team - you must attend all practices, play in matches, keep your grades high and represent your school in a positive light. There was so much support from the community and their team was featured on the local news and in the local newspaper. As you can tell, he was very excited to be a part of this! Our kids can do so many amazing things when given the opportunity!