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Changes for 2022: President’s Message

Once again, the past year has been filled with so many challenges. I am so proud of the way our CHARGE family continued to come together and support each other. It is that sense of community that gives me so much hope for 2022 and beyond.

Together, we pulled off our first virtual symposium. We launched the Crocker Barker CHARGE Sibling Scholarship and our Medical Travel Assistance Program. We also provided a welcome package to new families and broadened the Ethan Wolfe Recreational Assistance Program (EWRAP) by issuing awards on a rolling basis. We funded three more promising research projects that may eventually lead to real treatments for CHARGE. None of this would be possible without the generous support of our CHARGE community and the amazing volunteers that run the Foundation.

2022 is going to be a year of positive change at the Foundation. It is time for us to make some bold moves to further our mission. Thankfully, we have grown to the point that it is no longer possible to properly serve our community with a couple of part time employees and a few extremely dedicated volunteers.  In order to provide more support to our families, enhance our research programs, and catapult the Foundation to a new level of service to our community, we plan to hire a full-time Executive Director and full-time Director of Outreach and Engagement.  This transition will provide the framework to achieve our vision of a Better World for Individuals with CHARGE syndrome!

The progress we have made is a direct result of the money raised and donated by our CHARGE family. As we enter this new stage in the growth and development of the Foundation, we need everyone’s help to raise the necessary funds to continue to develop excellent Family Assistance Programs, accelerate the pace of research into treatments for CHARGE syndrome, produce the top conferences around and to create resources and materials to help our CHARGE community.

These undertakings are not going to be easy. It will take a lot of hard work and sacrifice. I am fortunate to serve with a great group of board members, advisors and volunteers that will make this transition a huge success. We can’t do it without all of you!

As we toast in the new year, I can’t wait to see what 2022 has in store.

Best wishes for a Happy and Heathy New Year.

David Wolfe