IDefine Blog
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Uncategorized  - September 16, 2022
Matt Lockwood - AUTHOR

IDefine celebrates two-year anniversary, accomplishments

On September 17, 2020, during the COVID pandemic, IDefine was launched. In the last two years, incredible progress has been made. On this KS Awareness Day, we’d like to reflect on our accomplishments, and share what’s next.

Our theme this year is empowerment, which is evident through the work we’ve done on our three organizational pillars of community, coordinated care, and research.

In just the last two years we have:

 

 

 

 

 

 

 

 

We have truly done some amazing work over the past two years, but there is much more to be done. We have new families being diagnosed every week. IDefine CEO Geoff Rhyne is working daily to connect with each of them to introduce them to our beautiful community and the effort we are building.

That said, we have new challenges to overcome as parents and as shepherds of this effort. We have been told there is a “lack of prevalence” of this condition–but we are small, we are mighty, and we are growing every day.

For IDefine to continue to reach important milestones on behalf of the KS community, we need your help. Regardless of your schooling or training, you have the potential to help champion our effort. We ask that you harness the passion you have for your KS loved ones by providing your time and energy, or through a financial contribution. We need you.

Thank you to our volunteers, our supporters, and our donors. Together we have accomplished so much. Happy Kleefstra Syndrome Awareness Day!