Connective Issues Winter 2023

We Support Your Kids!

The Foundation is here for your kids through our Kids Club, Camp Victory, conference programming, and more. Our Sydney Lerman Pediatric Hospitality Program brings joy to kids all over the country who are hospitalized or having surgery as a result of Marfan syndrome, Loeys-Dietz, or VEDS. Meet three children who were excited to receive gift packages from the Foundation during their recent hospital stays – Lillian from California, Camden from Utah, and Kevin from Ohio. The Sydney Lerman Pediatric Hospitality Program was started in 2017 by sisters Sydney and Carly Lerman of New York. Sydney, who is now a college student, endured many hospital stays throughout her childhood, including three months for a heart transplant and various hospitalizations for seven back surgeries. The sisters had a mission to let families who have a child in the hospital know that they are not alone and that the Marfan family is there for them. Through donations, this program provides a customized care package filled with goodies from coloring books and board games to local restaurant gift cards and other basic essentials to help them stay positive. The boxes are filled with loving and thoughtful gifts and shipped across the country. To learn more about this special project or if you know your child will be hospitalized and would like a gift box, visit Marfan.org/resources/ patients/lerman-program.

We LOVED our experience with this project. I was brought to tears by the generosity of the gifts. I loved being able to tell my son he isn’t alone with his health struggles. Thank you so much for this project! ~ Krystle, Camden’s Mom

My son has enjoyed the items, and it meant a lot to him to have the support of the Foundation. We lost many of our social supports during the pandemic, so the gifts were a bit of a life raft for him while waiting for his normal activities to resume. ~ Kelly, Kevin’s Mom Thank you so much! This gave Lillian LOTS to do as she adjusted to changes in her vision due to her eye surgeries and as she went through the appointments to get contact lenses and new glasses. The Lerman Project is doing awesome things for children! Thank you again! ~ Cathleen, Lillian’s Mom

Kudos to Christopher As we are coming upon Marfan Awareness Month in February, we want to recognize one teen who not only educated his school and community but also raised more than $15,000 for the Foundation last year. Christopher, whose brother, Charlie, has Marfan syndrome, wanted to do something to raise awareness about Charlie’s condition. So, he organized a fundraiser and walk at his school, going door-to-door, and asking for donations and explaining Marfan syndrome to his classmates. He was met with amazing support from his peers, business owners, and others who heard his story. Shortly after the walk, Christopher decided to explore more ways to get involved and keep his awareness e ff orts going - “I have no plan to slow down.” We can’t wait to see what Christopher does in 2023! There are many ways to get involved and make an impact! Explore our website to find the right fit for you.

p Christopher describes Marfan syndrome to his classmates

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Winter 2023