Rise Above for Kleefstra
Join us on September 18th, 2021 as we celebrate Kleefstra Syndrome Awareness Day. Featuring appearances by Dr. Tjitske Kleefstra, Julie Goff, Ashley Bristowe, and a special "Spotlight" shining on those in our community living with Kleefstra Syndrome! We will be raising money to continue driving the work of IDefine through individual donations or Family Teams! Looking forward to a great event!
Often times, having a rare genetic disorder like Kleefstra Syndrome means you are relegated to the sidelines. Sometimes, the perceived easiest of tasks can be a challenge. This is our opportunity to SHINE! We meet challenges and overcome them! We enjoy the little things, and we celebrate on our journey. We are inspired and motivated by those living with Kleefstra Syndrome, and this is the platform for them to shine! Your support helps develop care, community, and research initiatives that will continue to make these opportunities possible!
Rise Above Keynote Speakers
Dr. Tjitske Kleefstra
Dr. Tjitske Kleefstra is a clinical geneticist at the Department of Genetics at Radboud university medical center, where she was recently appointed as professor by special appointment in September 2020. Her work focuses on scientific research, specialist patient care, and education in the field of developmental disorders with a genetic cause.
Julie Goff is a college student attending Dean College who was diagnosed with KS 2 years ago. Recently for a class term paper, Julie was to use what she was learning about the brain and central nervous system to write a neuroautobiography. Julie's paper included research on KS related challenges such as ADHD, regression, and autism. The process of researching and writing the paper gave Julie the opportunity to gain a better understanding of herself and KS.
Mothering under normal circumstances takes all you have to give. But what happens when your child is disabled, and sacrificing all you've got and more is the only hope for a decent future? Full of rage and resilience, duty and love, Ashley Bristowe delivers a mother's voice like no other we've heard.
"Do your little bit of good where you are; it’s those little bits of good put together that overwhelm the world." ~Desmond Tutu
We are feverishly working to further build community, develop better coordinated care guidelines and accessibility, and drive research towards potential therapeutic interventions. Your donations help accelerate and fuel our mission by tackling our biggest limiting factor: funding. We need your help to continue the momentum we have built!
We are extremely grateful and appreciative of all those who have contributed to this event. Without you, this would not be possible!
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