Giving Tuesday 2022 - No Mountain To High

No Mountain Too High

For #GivingTuesday, we are highlighting the power of synergy between all stakeholders (families, researchers and clinicians) when tackling the obstacles they face in the search for treatment or a cure for a rare disease such as OCNDS.   

Families face many obstacles in their rare disease journey: from diagnosis, care, treatment, and finding a cure. On average, it takes families 7 years to land on the right diagnosis.  In 2016, when families received an OCNDS diagnosis, there was no foundation, no information, no website, and no community.  In 2016, we were told that no one was studying we started a foundation & funded research ourselves. 

Science is progressing at a rapid rate. Rare diseases once thought to be incurable or untreatable are being treated. After speaking with experts and academics, it was abundantly clear that there is a real possibility we can find a treatment/cure for OCNDS.

In 2018, CSNK2A1 launched. Our mission - to find a cure for Okur-Chung Neurodevelopmental Syndrome and ensure affected individuals have the opportunities and supports necessary for happy and full lives.

“The best method of overcoming obstacles is the team method.” At our conference in 2018, we had 1 researcher attend. In 2022, we have over 30 researchers across 7 institutions worldwide working on OCNDS. Our researchers are collaborating, sharing data, and publishing together. In addition, they are getting out of their labs and meeting families to learn firsthand about the daily struggles of those living with OCNDS. 

There is no Mountain Too High for the OCNDS community: we will tackle every obstacle to fulfill our mission. On this #GivingTuesday, will you climb this mountain with us and help us find a treatment and a cure for OCNDS?

Double Your Support for OCNDS research

Time is of the essence. We need to find treatments for those living with OCNDS. From November 29th - December 31st, your gift will have DOUBLE the impact!

Our generous donors, Joan and Charlie Davis, are matching gifts up to $50,000. Act now to fund twice as many life-changing OCNDS research programs