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Before I talk about the All Things Kabuki event that was held in Cleveland this past July, I wanted to give a little background on how the event began, why we landed where we did and when. Please note that this post is written from the perspective of the author!
In 2011, Kathleen Yockey started a Kabuki syndrome gathering in Mansfield, Ohio. She planned, funded and hosted the event for 5 years. Last year, as I was speaking with her about the event, I asked how I could help. Kat let me know she would not be able to do it that year because her daughter’s health required too much attention. So I told her I would take over that year. Unfortunately, life got in my way and I didn’t get much planning done. So when Ashley, Holly, Rene and I began discussing an event for ATK, I mentioned the situation. Not only did they agree that it was the perfect place, but it would also allow Kat and Makaya to still attend despite being unable to host as they had in previous years.
Photo: Kat and Makaya before a dance
If I remember correctly, we started planning that event in June or July and somehow made it happen by the November date we had selected. This is mostly due to Holly and Rene’s planning and crafting abilities, but Ashley and I pitched in where we could.
The first event was held on November 18, 2017 at the Fenn Tower Ballroom, located on the campus of Cleveland State University. There were a total of 37 families in attendance, with a total of 170 guests. Professional guests were Team Roya, Dr. Andrew Lindsley, Dr. Elias Traboulsi, Dr. Mark Hannibal and Debbie Hartman of Takeda. Speakers included Dr. Olaf Bodamer (Roya), Dr. Lindsley and Dr. Hannibal. Rene also decided that this would be the perfect time to give out the annual Elizabeth Golab Memorial Award. There will be a page on the website soon showing all of the recipients, but I am honored to say that I was the recipient of the award last November. ATK gives it annually to a person who has made a significant impact in the Kabuki syndrome community. Honored isn’t even the right word, humbled, maybe. Definitely surprised! Of course we didn’t get through that speech without a few tears! And then Rene introduced a new award for Volunteer of the Year, which she rightfully awarded to Holly O’Brien, who is extremely instrumental in the daily functioning of ATK. She does a ton of legwork and research, which makes my job as the webmaster so much easier! Truthfully, she should get it this year too!
<---Holly's
Volunteer of the Year Award
Serena's Elizabeth Golab Award --->
Now for the event that was hosted this summer! The event was held on July 14th at the Cleveland Airport Marriott. There were 58 families from 26 states and Canada in attendance this year, and when including professional guests, there were a total of 234 people. This year’s speakers were Takeda Pharmaceuticals, Dr. Mark Hannibal of Mott Children’s, Dr. Olaf Bodamer of the Roya Kabuki Program at Boston Children’s Hospital and Rachael VanDyke, a Kabuki mom whose son has battled gut issues for years and resorted to a homemade blenderized diet to help him heal. There were additional professional guests from the Roya Kabuki Program as well, researchers who were able to set up shop right outside the conference room to get as many Kabuki families enrolled in their study as possible. The Elizabeth Golab Memorial Award was given to Dr. Olaf Bodamer for his immeasurable impact on the research being conducted on Kabuki syndrome today.
Photo: Rachael VanDyke speaking in Cleveland
While we considered the November event a success, we also learned quite a bit from it. For instance, having the hotel house all of the families PLUS the conference made for a much easier stay for many families. It was easy to escape to the hallway or the courtyard or even a room if the need arose, and it didn’t disturb the conference. Which is why we’ve elected to use the hotel for next year’s event as well. Not to mention that the Marriott was much easier to work with, far more flexible, and much more willing to meet our needs.
Left to Right: Dr. Hannibal with Kabuki kids Brooklyn, Samuel, Leandra and Venessa with brother Juan; Debbie Hartman of Takeda Pharmaceuticals with Kabuki kids Brooklyn, Rikki and Ciara; Dr. Bodamer with Kabuki kids Samuel and Brooklyn.
Another thing we learned was that it is not easy to have your phone out to take pictures all the time during the event, so we received a recommendation for a local photographer. We were blessed to have Cady Meloy Photography of Kent, Ohio donate their services to photograph our event. Not only were the photographers professional, but they offered to take photos of each family if desired, and they captured some amazing candid moments of almost every Kabuki kid in attendance. You can view the album here. We cannot thank them enough!
Perhaps the most beautiful thing to come out of the November event was the relationship we built with Takeda Pharmaceuticals. With their assistance, ATK had the ability to provide a grant to families who could not afford the hotel cost. There were a total of 13 families that received the hotel grant, and that means 13 families that might not have otherwise been able to attend.
All Things Kabuki Family Gathering 2018, Group Photo
Events like these are so important to our families, we really encourage anyone who can get to one, do so. Even if it’s not an ATK event, go to an event, meet other families, see the other Kabuki kids. You’ll marvel at the similarities and differences, you’ll see twins or triplets or maybe even more that all look like siblings. You’ll get to talk to other parents, people who are traveling the same path as you, or who have been there before and can help you with the obstacles. It is so important for our families to know they are not alone!
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