Join Canadian Parent Advisory Board members, Elisabeth Mellinger and Michelle Proctor-Simms, for a Canadian family zoom meet-up on September 20th at 5pm ET to talk and share stories about raising a child with a rare syndrome in Canada. Topic: OCNDS/CSNK2A1 Canadian Family Meet up Time: Sep 20, 2021 05:00 PM Eastern Time (US and...
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Join Parent Advisory Board member, Rhiannon Cramer, for our monthly OCNDS family Zoom call where families can connect, ask questions and share their stories. This Friday, July 9th, at 4pm Eastern Time (here is a website to convert the time to your time zone: https://www.thetimezoneconverter.com/) Topic: CSNK2A1/OCNDS Monthly Family Zoom Call Time: Jul 9,...
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Receiving an OCNDS diagnosis can be overwhelming and heartrending. Our Parent Advisory Board (PAB) understands how difficult it can be to navigate an OCNDS diagnosis. To help families on this journey, our PAB developed an OCNDS/CSNK2A1 Foundation brochure. This brochure can be shared with your family, friends, teachers, providers, and clinicians to learn more...
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Sunday, May 16th at 2pm and 7pm, Claire Whitehill, an OCNDS parent and Parent Advisory Board member, is hosting a UK family Zoom call for UK families to connect and share their journeys. Here are the Zoom links. May 16th at 2pm Topic: UK OCNDS Family Meet Up (No. 1) (2pm) Time: May 16,...
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Most, if not all, doctors have never heard of OCNDS and have no idea how to provide care for those living with OCNDS. We can change this! OCNDS families can make a difference today by signing up for the CSNK2A1 Simons Searchlight Natural History Study! Are you interested in participating and would like to...
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We are thrilled to announce we are working on new initiatives for the OCNDS community. We are forming our inaugural Parent Advisory Board. We are looking for caregivers or parents who want to get more involved. This is an exciting opportunity for parents or caregivers of an OCNDS patient to make a difference in...
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