“We loved attending Conference and I think it is an amazing place to learn and expand your knowledge. Knowledge is power!” -Taylor H.
“Our oldest (big sis to our youngest, with CHARGE) absolutely LOVED every conference. They are 26 and 21 now and both looking forward to next summer. The conferences remain some of our most special family vacations together. Our only regret is the few that we missed.” – Tracey C.
“Conference to me means knowing I’m not alone, celebrating how far my child has come, and looking forward to the opportunities that she will have. Conference is being home with people who truly understand the journey we’re on. It is being accepted and enjoying the freedom to be real about the struggles we face.” -Penni E.
“Conference to me is the ability to learn from the CHARGE experts – no, not the professionals but the individuals themselves. Getting to see the individuals with CHARGE interact with each other and see the family connections with each other and professionals is inspiring and motivating!” -Anne S.
“Conference is an amazing opportunity to learn from the experts about CHARGE Syndrome. Being able to talk and connect with families and individuals with CHARGE syndrome is such a valuable experience; as they are the true experts!” -Sara E.
“Esta gran experiencia nos dio muchos conocimientos para ayudar y comprender aún más a nuestra hija y la maravillosa oportunidad de compartir con otras familias de otros lugares y países. La Conferencia de Charge del 2023 fue nuestra primera experiencia, nunca es tarde, que no te lo cuenten, ven y vivelo tú mismo”
This great experience gave us a lot of knowledge to help and understand our daughter even more and the wonderful opportunity to share with other families from other places and countries. “The 2023 CHARGE Conference was our first experience, it’s never too late, don’t let them tell you, come and live it yourself” -Kenia S.
“As a professional, CHARGE Syndrome Conferences are unlike any other conference I have ever attended. It is an opportunity for our CHARGE community to come together and not only learn from one another, but foster lifelong friendships. Conferences are rejuvenating and cultivate our unique and robust community.” -Lily S.
“Family: while there is no cookie cutter individual with CHARGE, one would not suspect that Jocelynn has a genetic mutation. Even so, we have been accepted without question, as family. We have been loved, as family. She may not have the same difficulties that others may have, but we always feel like family. We all have shared experiences, and the conference not only give us a chance that we may not otherwise get to relate to others in the CHARGE family, but to see them grow and succeed! We are all invested in this journey together, we are all family!
Cannot wait for Arizona!!!! ♥️” -Michael B.
“I remember the first time I walked into a CHARGE conference. Everyone’s kids so similar to my own. Nobody batting an eye or giving a second thought to what the real world considers unusual behaviors. We finally found a place where we fit in and have not missed a single conference since our first.” -Joanne L.
Growing up with Conference
by Sarah Lent
I’ve attended every CHARGE Syndrome Conference since my family started going in 2003, when I was seven. Conferences were our family vacations. My parents always made sure we got to explore the area – some highlights were the San Diego Zoo, the White Sox perfect game in 2009, and Disney/Universal trips in Orlando.
While at Conference, my favorite thing was going to Sibshops. I was lucky enough to attend the first Sibshops at Conference in 2005, attending as many as I could as a kid before helping as a Junior Leader, and as a Sibshops leader now.
I also vividly remember going to one of David Brown’s presentations about the eye when I was 13 and thoroughly enjoying it.
I didn’t fully realize how magical Conferences were until I was a teenager. Having decided I wanted to go into Special Education because of my brother, I was so lucky to meet professionals in the field that I look up to. As an adult, I’ve loved getting to know other siblings, participating in Sibling Panels, and going off-site to In-n-Out or to the movies. Conference has been such an important part of my life, and it always leaves me inspired. I’m looking forward to Phoenix, and all the Conferences to come.
Click here to watch Sarah’s video about Sibshops.
The Shikora Family: Taking CHARGE in Orlando
I have to begin this by saying I can’t believe we waited 12 years to go to our first
CHARGE Syndrome Conference. It was one of the most incredible experiences we have
had since Hannah was born. Coincidentally her 12 th birthday fell during the week of the
conference. What a way to celebrate! We have not traveled much since Hannah was
born. Prior to this Conference we were always very nervous to go too far from home. We
were immediately inspired by the families who traveled not only to this conference, but
who have been attending conferences since CHARGE Syndrome became a part of their
lives. It did not take too long to realize after we got there, that we are a CHARGE
Family and we can do anything! We always feel so alone in our day to day struggles and
all of a sudden we were just like everyone else.
The conference itself was so much more than we had ever imagined. From the pool party
kickoff to the Conference farewell we were completely immersed in everything that was
going on. Our three girls enjoyed every moment as well. The camp program was
phenomenal for Hannah and her younger sister. Our oldest daughter enjoyed some of the
breakout sessions as well as being a Jr. Leader for sibshops. The way the conference was
coordinated to include every family member made it really special for all of us. We
couldn’t help feeling overwhelmed just thinking about the coordination it must take to
organize this Conference.
Meeting some of the people who to us ARE the CHARGE Syndrome Foundation was
one of the best parts of the conference. Those we have spoken to on the phone, emailed
or have heard on a webinar…we felt like we were meeting celebrities. Not to mention
the actual celebrities who were there, Signing Time’s Rachel and Leah. I had to mention
that as it was definitely a highlight for us. It was also great to meet all of the researchers
who have dedicated their lives to asking questions and helping to provide answers about
CHARGE. We found the research fascinating and were thrilled to have the opportunity
to participate in some of the studies being done at Conference.
We already can’t wait to go to the next Conference in Dallas. This will be the furthest we
have ever traveled, but we are a CHARGE Family and are already prepared for the
challenge. We can’t wait to see the friends we met in Orlando and look forward to
meeting other families, making new friends and learning even more about CHARGE
syndrome.
We are so appreciative to the programs that helped us get to our first conference.
Without their assistance it would have been really difficult for us to attend. Thank you to
Hannah’s Helping Hands, New York Deaf-Blind Collaborative and of course the
CHARGE Syndrome Foundation. Your financial support in helping families attend this
amazing Conference as well as all of the emotional support we have received over the
years has been incredible. We hope that in the future we can give back to these programs
and help another family go to their first conference. I can assure you it will be an
experience you will never forget.
