Aly Taggart’s family is a member of the CdLS Foundation, based in Avon, Connecticut. The foundation is also set to participate in this year’s Denise D’Ascenzo Foundation Walk. 

While the CdLS Foundation began 40 years ago as a small collection of families supporting each other, it has grown to reach families globally, said Ashley Kus ’14, a Quinnipiac alumna and CdLS Foundation communications coordinator. 

“The CdLS Foundation was founded by Julie and Frank Mairano whose daughter, Lisa, had CdLS. Julie and Frank volunteered their time and services to help grow the organization,” Kus said. “By 1981, the foundation, which started in the Mairano’s house, was incorporated and had achieved nonprofit status, and in 1988, its membership had grown to 250 families. Today, our staff works to connect families from all over the country and internationally.”

The CdLS Foundation has raised $1,495 for the upcoming Denise D’Ascenzo Foundation Walk. 

Aly Taggart said she is looking forward to walking for her brother, Dylan Taggart.  

“I am very excited to be participating in the Denise D’Ascenzo Foundation Walk to Fight Rare Diseases. It means a lot that my school is a part of something that is so near and dear to my family,” she said.

Aly Taggart’s love for her brother is evident in the way she speaks about him. 

“Dylan is 18 years old and was born with CdLS. It occurs in approximately 1 in 10,000 births. Those with CdLS usually have certain physical characteristics such as distinct facial features, limb loss or differences, and other differences such as developmental delays, intellectual disabilities, medical complexities and more depending on the child. My brother was fortunate enough to have been born with all his limbs and little to no medical issues. He is different from a typical 18 year old in the sense that due to his developmental and intellectual disabilities he presents at a much lower grade level, he does not usually speak to others due to something called selective mutism, and he is fully dependent on my parents. My brother is super smart; he is kind and loves everyone around him. He may not speak to you, but he doesn’t need to for you to know he loves you. He loves cooking, maps, and texting and emailing everyone he knows to pass time.”

Aly Taggart was so inspired by her brother that she chose a career in occupational therapy.

“Dylan received many services growing up, and he still does, one of which is occupational therapy,” she said. “He is the reason I decided to pursue occupational therapy at Quinnipiac. I saw how receiving services gave Dylan a sense of independence, structure, routine and overall social interaction. I wanted to pursue a career that I had a connection to. I always knew I wanted to help people, so it was a very easy decision for me to go down the path that made a difference in my brother's life.”

Aly Taggart said she is grateful to Quinnipiac for helping to bring awareness to CdLS and other rare diseases through hosting the Denise D’Ascenzo Foundation Walk.

“A message I would like to share to others about this walk is to know how important and special it is that Quinnipiac is holding this event to raise money and awareness for rare diseases,” she said. “Even for those who cannot attend and walk, it is truly amazing that so many people were able to donate. This walk brings attention to rare diseases, showing us that community, awareness and action can turn 'rare' into recognized. Lastly, I’d like to say that my family and I are so thankful and excited that CdLS is being brought to the attention of others because it is one of the lesser-known rare genetic disorders, and it has played such a large role in our lives. You never know what families are going through, and I am so happy this event is raising money and awareness for a cause that is so valuable to many.”