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Lifetime Membership Testimonials

Members are the lifeblood of the Foundation. By working together, we can create a better world for all individuals with CHARGE syndrome.


In addition to our Annual Memberships, there are four Lifetime levels available. Lifetime Members enjoy lifelong access to our suite of member benefits, as well as discounted Conference registrations. Every membership shows your support of the largest organization dedicated solely to making the world a better place for individuals with CHARGE syndrome. Becoming a member, you will have a direct impact on increasing awareness, education, outreach and research.

See why others have decided to become Lifetime Members, and what their membership with the CHARGE Syndrome Foundation means to them.

“I’ve attended many CHARGE conferences over the years, both as a speaker and a Sibshop leader. All of the conferences included tracks for various family members. The Foundation has long recognized the unique needs of typically developing siblings. The sibling relationship is usually the longest-lasting one in the family and by providing support in childhood it increases the likelihood of the siblings staying lovingly involved as adults. Including siblings in conference programming benefits the entire family. Each conference I attended was an enriching experience for me — and they were all lots of fun! There are many reasons I chose to become a Lifetime Member: the Foundation’s work in family support and research, the opportunities to meet families from around the globe, the professionals who enriched my knowledge of academic issues, the friends I gained. But the best reason of all is that CHARGE sibs are some of the most amazing people I’ve ever met!” -Tina Prochaska

“Back in 1998 when our daughter Kennedy was born with CHARGE syndrome, the Foundation quickly became our lifeline. They provided us with resources, connected us with other families, and the conferences were life-changing experiences for us. The Foundation has continued to grow and develop even more support materials for families and professionals, funding research, initiating new support programs such as EWRAP and more. I just can’t say enough about the work that the Foundation does to support not only individuals and families but also to encourage all of our understanding of CHARGE around the world.” -Lisa Weir

“I chose to be a lifetime member because I wanted to support the Foundation for all the help the members have given me over the years. I feel so thankful to the community and the Foundation for helping me to get through some tough emotional times of my life.” -Chey McLaren, Adult living with CHARGE syndrome.

Being a teacher is a critical role in the lives of so many students. Being a teacher of students who are DeafBlind, including students who have CHARGE syndrome, is special. Having taught for over 35 years and having students in my classes who have CHARGE syndrome throughout the years has piqued my interest in how best to teach these fabulous individuals. As I learned more about how to teach students with CHARGE syndrome and attended multiple conferences, I was able to learn new techniques, gather more information and meet so many children, teenagers and young adults with CHARGE syndrome as well as their families. I want other teachers to have these same opportunities to learn and grow to become better teachers. Being a lifetime member of the CHARGE Syndrome Foundation is one simple way I can support the growth of others. This wonderful organization is dedicated to educating families and educational and medical professionals about CHARGE syndrome. Being a lifetime member helps support their mission to improve the lives of children with CHARGE and helps spread the word about CHARGE!” -Sharon Stelzer

“As an adult with CHARGE, the Foundation has given me an extended family. A community of people like me who understand the challenges I face and can support me through them, offer insight, and also share joy in accomplishments. Being a lifetime member of the CHARGE Syndrome Foundation gives me a chance to give back to the family that has enriched my life in so many ways.” -Aubrey Williams

“Our family wanted to become lifetime members for a few reasons. First, CHARGE syndrome will be part of our forever and this is a way to acknowledge and celebrate its impact on our family unit. Second, we LOVE conference and the other opportunities afforded to us by the Foundation. We plan to go to continue taking advantage of those opportunities as long as we can and being Lifetime members demonstrates our support for the Foundation and our desire for their important work to continue. And finally, remembering to renew annually is a pain — one and done is better and easier!!” – Kate Smith