Why We Look Forward to International Rett Syndrome Conferences

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by Jackie Babiarz |

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In April, we will attend our fifth International Rett Syndrome Foundation (IRSF) conference since 2011, when our daughter Cammy was diagnosed with Rett syndrome at 20 months old. We have attended each conference with open hearts and minds. We have specific goals each year, but our overall agenda has remained the same: to connect with other parents who have children with Rett syndrome.

While Rett Syndrome Research Trust focuses on finding a cure, IRSF remains committed to improving care as well. We fully committed to IRSF after our first conference, just three months after Cammy was diagnosed, as we experienced just how critical the care portion was.

When Cammy was diagnosed, we supported both organizations because we did not yet know which fit us best. We had family and friends donate to both.

At first, we just had tunnel vision for the cure. That changed after our first IRSF conference in Boston.

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As a newly diagnosed family, we were immediately hooked and motivated after listening to keynote speaker Dick Hoyt, a marathon runner who raced with his son, Rick, who has cerebral palsy. IRSF set up breakout sessions for newly diagnosed families to meet. We cried as we shared similar stories about searching for a diagnosis.

Throughout the weekend, we heard incredibly inspirational stories from families who were not letting Rett syndrome hold them back. We learned about current research, upcoming clinical trials, and how to care for our child at different stages in her life.

We found solace in these sessions and met lifelong friends. We understood why IRSF’s focus on care was crucial.

Our families and friends saw a positive change in us when we returned. We had hope. There were times our loved ones couldn’t provide the empathy and understanding we needed, but other Rett families were able to do it. Our family and friends instantly got on board, supporting IRSF as well.

At later conferences, we were eager to meet up again with Rett parents from all over the country. We weren’t the newbies anymore. We could share insight and advice with new families.

While we still attend sessions about caring for our children at different stages in life (among other topics, including therapies, research, communication, wills, and trusts), for us, the care part means connecting with other families. That connection is our therapy, hope, and motivation.

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From left, Denay and Sam Hooks, Jacqueline and Bill Babiarz, Kelly Schoeller, Chris Kolendrianos, and Katie and Jim Bathie attend an IRSF conference in Chicago in 2016. They have become lifelong friends. (Courtesy of Jacqueline Babiarz)

Focusing on care lifts us up and helps us stay on our path. It drives us to continue to fundraise for a cure.

The Ascend 2022 Rett Syndrome National Summit is in Nashville, Tennessee, on April 27–30. The keynote speakers will be Dr. Huda Zoghbi, a professor and researcher whose lab was responsible for discovering the gene that causes Rett syndrome, and Chris Ulmer, the founder of neurodiversity movement Special Books by Special Kids. An all-star lineup of researchers, clinicians, and directors are set to speak and educate. It is an incredible opportunity for parents, grandparents, teachers, therapists, aides, and clinicians to learn more about Rett syndrome.


Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Rett syndrome.

Comments

Tim avatar

Tim

We are so sad to miss the conference! Our Rett daughter is 4 and since the vaccines are not approved for children under 5, she won't be able to be vaccinated in time. We are already looking forward to the next conference. We love your posts, encouragement, and the hope you provide!

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Jackie Babiarz avatar

Jackie Babiarz

We look forward to meeting you at the NEXT conference then!

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