Hello everyone! Happy Friday. It has been a little bit crazy for me here. I still can’t believe that I have been so behind on writing my blog posts lately. This one is kind of extra special for me to write about because it has to do with the syndrome that I have. Over the past few years I have been learning a lot more about Kabuki Syndrome and who I am as a person. It’s so nice to be able to connect with others who have the same syndrome as me and also being being to connect with parents who have children with Kabuki syndrome. It was near the end of the summer when I connected with The Kabuki Syndrome Foundation. I had emailed them because I wanted to see if there was anything that I could do to help advocate for them or if there was anything that I could do to help. As most of you know I am wanting to do whatever I can to help out with my community who have intellectual disabilities. Being able to help my Community has empower me and also it has inspired me to do more. So when I receive an email back from The Kabuki Syndrome Foundation asking me if I would be interested in taking part of their 2023 Kabuki Syndrome Foundation Annual virtual Conference. I was so excited and honored that they had asked me to take part and I couldn’t say no to this incredible opportunity. So I had replied back to let them know that I would accept the invitation to take part in this virtual event. This virtual event was for anyone who wanted to take part and learn more about Kabuki Syndrome. We had people from all over the world that were tuning in. We also had different families and people with Kabuki Syndrome that were speaking about their experiences throughout the whole event. This event happened on Tuesday November 7, 2023. There was also different Doctors on this Conference as well talking about some of the breakthroughs that they have been making from over the years and talking about new information. They were also talking about different new studies that they were doing. There was a lot of that information that was way over my head. Anyways I was thrilled that I got to be apart of the Adult Panel talking a little bit about my experiences and also answering questions from people all around the world who have young children with Kabuki Syndrome. My hope out of this whole thing was that I was making a difference for young children and families who have a loved one with Kabuki Syndrome. Knowing that good things can come for them as well and being able to see the light at the end of the tunnel. I just want to take this opportunity to Thank The Kabuki Syndrome Foundation again for letting me be apart of this years event. I hope that I can do more for them in the future. Here’s the recording of the panel that I got to be apart of. I hope you enjoy!
~Crystal~
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