Parent Advisory Board – CSNK2A1 Foundation

Canadian Family Zoom Family Meet-Up

July 9, 2021July 9, 2021Jennifer SillsLeave a comment

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...

Monthly OCNDS Family Zoom Call

July 6, 2021July 23, 2021Jennifer SillsLeave a comment

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,...

OCNDS/CSNK2A1 Foundation Brochure

June 29, 2021July 8, 2021Jennifer SillsLeave a comment

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...

UK OCNDS FAMILIES MEET UP

May 15, 2021May 19, 2021Jennifer SillsLeave a comment

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,...

Simons Searchlight research registration Zoom party April 17, 2021

April 1, 2021May 11, 2021Jennifer SillsLeave a comment

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...

ANNOUNCING OUR INAUGURAL PARENT ADVISORY BOARD

April 15, 2020April 15, 2020Jennifer SillsLeave a comment

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...