Past Events

Continued Q&A 2022
By Jennifer Sills 02 Sep, 2022
Thank you to everyone who made our 2022 Scientific & Family Conference held in partnership with Simons Searchlight a HUGE success . We had such an overwhelming response that we couldn’t answer all the questions posed in the Q&A session. On September 25, 2022, at 9 am Eastern Time (U.S. and Canada), Dr. Wendy Chung, Dr. Volkan Okur, and Dr. Isabel Dominguez are joining us for an additional Question & Answer session. Register in advance for this webinar here . After registering, you will receive a confirmation email containing information about joining the webinar. Live caption translations will be provided during the webinar. Most languages are supported. If you missed the conference, you can watch the videos here . See you on September 25th . If you are unable to attend, this session WILL be RECORDED. #ocnds #csnk2a1 #hopeintoaction #timeisnow
2022 Fun Run logo
By Jennifer Sills 31 Aug, 2022
JOIN US! Join our worldwide Okur-Chung Neurodevelopmental Syndrome (OCNDS) community on OCTOBER 15TH and OCTOBER 16TH for our NO MOUNTAIN TOO HIGH for OCNDS Run, Walk & Roll! This event will help raise awareness and fund research for OCNDS, an ultra-rare genetic disease that affects individuals worldwide. DO I NEED TO RUN TO PARTICIPATE? Absolutely not! This is called a run, walk, or roll. Our goal is for you to safely come together with others to bring awareness to OCNDS. Invite some friends and family to join you to move into action TOGETHER for OCNDS. You can meet at the park, your street corner, the beach, or anywhere – get out of the house and move! You can RUN. You can WALK. You can ROLL whether on a bike, wheelchair, walker, scooter, roller skates, or rollerblades. What is our theme for the year? Our foundation theme for the year is NO MOUNTAIN TOO HIGH . We intend to find a treatment and a cure for OCNDS. We will tackle any obstacles in our way and stop at nothing until we find one. Send us your photos of you with your friends and family shouting OCNDS from around the globe bringing awareness to OCNDS. WHY RUN, WALK or ROLL? WHY DONATE? OCNDS is a lifelong condition that significantly impacts the lives of those affected and their families. There is no treatment or cure – YET! We are living in a time where genetic conditions thought to be incurable are now being treated. Together we have the chance to fund life-changing research and increase global awareness. Proceeds benefit the CSNK2A1 Foundation, whose mission is to raise awareness and funds to support research that leads to actionable treatments which will make a meaningful difference in the lives of those affected by OCNDS. STEPS TO PARTICIPATE: Step 1. Register to run/walk/roll the virtual 5k or 1 mile , and invite your family and friends to join! Give your t-shirt size and mailing address. Step 2. Invite your friends and family to join you and register. Awards to be given for: *Loudest Family/Individual on Social Media, *Top Fundraiser, and *Most Liked Photo on Social Media PRICING : $25 per adult registrant, $15 per child (2-18) registrant Each registration fee includes (1) Move Into Action Event T-Shirt and (1) digital race bib. For example, if you register (2) adults and (2) kids, you will receive (4) t-shirts and (4) digital race bibs. Due to shipping challenges, we can only guarantee T-shirts for those who register BEFORE October 01, 2022.
By Jennifer Sills 26 May, 2022
Join us on Saturday, July 23rd for our monthly OCNDS Family Zoom Meeting hosted by our Parent Advisory Board . We will discuss successes, challenges, and all things OCNDS. This meeting is only for primary caregivers, guardians, and those living with OCNDS. We will be using AI technology for live-caption translation. Most languages are supported by this technology. When: Saturday, July 23, 08:00 AM Pacific Time (US and Canada) Register in advance for this meeting here . After registering, you will receive a confirmation email containing information about joining the meeting. Best Practices for a Successful Call: Use a computer or laptop if possible. Works well with Chrome, Firefox, Safari or Edge. A cell phone will make it challenging to participate because you will only be able to see the translation screen or the zoom screen but not both screens at once. Speak slowly and clearly. State your primary language (pause a couple of seconds) To introduce yourself: please say your name, country, the person with OCNDS’s name and age, 1 challenge, and 1 success (up to 1 minute) Think about what you will say before speaking to help with ease of translation. Make sure you are in a quiet place so the translation technology can hear you. Try to avoid having music in the background. Avoid talking over other speakers. Stay on mute when not speaking. Privacy, confidentiality, and safety are of the utmost importance during these family zoom calls. The meeting will last for 90 minutes.
By Jennifer Sills 26 May, 2022
Join us on Sunday, August 28th for our monthly OCNDS Family Zoom Meeting hosted by our Parent Advisory Board . We will discuss successes, challenges, and all things OCNDS. This meeting is only for primary caregivers, guardians, and those living with OCNDS. We will be using AI technology for live-caption translation. Most languages are supported by this technology. When: Sunday, August 28, 08:00 AM Pacific Time (US and Canada) Register in advance for this meeting here . After registering, you will receive a confirmation email containing information about joining the meeting. Best Practices for a Successful Call: Use a computer or laptop if possible. Works well with Chrome, Firefox, Safari or Edge. A cell phone will make it challenging to participate because you will only be able to see the translation screen or the zoom screen but not both screens at once. Speak slowly and clearly. State your primary language (pause a couple of seconds) To introduce yourself: please say your name, country, the person with OCNDS’s name and age, 1 challenge, and 1 success (up to 1 minute) Think about what you will say before speaking to help with ease of translation. Make sure you are in a quiet place so the translation technology can hear you. Try to avoid having music in the background. Avoid talking over other speakers. Stay on mute when not speaking.' Privacy, confidentiality, and safety are of the utmost importance during these family zoom calls. The meeting will last for 90 minutes.
By Jennifer Sills 23 May, 2022
Join us on Sunday, June 26th for our monthly OCNDS Family Zoom Meeting hosted by our Parent Advisory Board . We will discuss successes, challenges, and all things OCNDS. This meeting is only for primary caregivers, guardians, and those living with OCNDS. We will be using AI technology for live-caption translation. Most languages are supported by this technology. When: Sunday, June 26, 08:00 AM Pacific Time (US and Canada) Register in advance for this meeting here . After registering, you will receive a confirmation email containing information about joining the meeting. Best Practices for a Successful Call: Use a computer or laptop if possible. Works well with Chrome, Firefox, Safari or Edge. A cell phone will make it challenging to participate because you will only be able to see the translation screen or the zoom screen but not both screens at once. Speak slowly and clearly. State your primary language (pause a couple of seconds) To introduce yourself: please say your name, country, the person with OCNDS’s name and age, 1 challenge, and 1 success (up to 1 minute) Think about what you will say before speaking to help with ease of translation. Make sure you are in a quiet place so the translation technology can hear you. Try to avoid having music in the background. Avoid talking over other speakers. Stay on mute when not speaking. Privacy, confidentiality, and safety are of the utmost importance during these family zoom calls. The meeting will last for 90 minutes.
By Jennifer Sills 23 Apr, 2022
Join us on Sunday, May 22, 2022 , for our monthly OCNDS Family Zoom Meeting. We will discuss successes, challenges, and all things OCNDS. This meeting is only for primary caregivers, guardians, and those living with OCNDS. All languages welcome. We will be using AI technology for live-caption translation. When: May 22, 2022, 08:00 AM Pacific Time (US and Canada) Register in advance for this meeting here . After registering, you will receive a confirmation email containing information about joining the meeting. Best Practices for a Successful Call: Use a computer or laptop if possible. Works well with Chrome, Firefox, Safari or Edge. A cell phone will make it challenging to participate because you will only be able to see the translation screen or the zoom screen but not both screens at once. Speak slowly and clearly. State your primary language (pause a couple of seconds) To introduce yourself: please say your name, country, person with OCNDS’s name and age, 1 challenge and 1 success (up to 1 minute) Think about what you will say before speaking to help with ease of translation. Make sure you are in a quiet place so the translation technology can hear you. Try to avoid having music in the background. Avoid talking over other speakers. Stay on mute when not speaking. Privacy, confidentiality, and safety are of the utmost importance during these family zoom calls. The meeting will last for 90 minutes.
By Jennifer Sills 28 Mar, 2022
Join us Saturday, April 9, 2022 , for our monthly OCNDS Family Zoom Meeting. We will discuss successes, challenges, and all things OCNDS. This meeting is only for primary caregivers, guardians, and those living with OCNDS. All languages welcome. We will be using AI technology for live-caption translation. When: Apr 9, 2022 08:00 AM Pacific Time (US and Canada) Register in advance for this meeting here . After registering, you will receive a confirmation email containing information about joining the meeting. Best Practices for a Successful Call: Use a computer or laptop if possible. Works well with Chrome, Firefox, Safari or Edge. A cell phone will make it challenging to participate because you will only be able to see the translation screen or the zoom screen but not both screens at once. Speak slowly and clearly. State your primary language (pause a couple of seconds) To introduce yourself: please say your name, country, person with OCNDS’s name and age, 1 challenge and 1 success (up to 1 minute) Think about what you will say before speaking to help with ease of translation. Make sure you are in a quiet place so the translation technology can hear you. Try to avoid having music in the background. Avoid talking over other speakers. Stay on mute when not speaking. Privacy, confidentiality, and safety are of the utmost importance during these family zoom calls. The meeting will last for 90 minutes.
By Jennifer Sills 05 Mar, 2022
Save the Date – April 5th is International OCNDS Awareness Day
By Jennifer Sills 05 Mar, 2022
Are you a dad to a person living with OCNDS or are you a dad with OCNDS? SAVE THE DATE! CALLING ALL DADS to join Brian Reynolds, OCNDS dad to Harper, age 10, where DADS ONLY will discuss all things OCNDS. AIl languages welcome. AI technology provided for live-caption translation! Mark your calendars for Sunday, April 24, 2022 at 8am Pacific Time (US and Canada). Register in advance for this meeting here . After registering, you will receive a confirmation email containing information about joining the meeting.
By Jennifer Sills 01 Mar, 2022
Join us in March for our monthly OCNDS Family Zoom Meeting . We will discuss successes, challenges, and all things OCNDS. This meeting is only for primary caregivers, guardians, and those living with OCNDS. All languages welcome. We will be using AI technology for live-caption translation. When : Mar 27, 2022 08:00 AM Pacific Time (US and Canada) Register in advance for this meeting here . After registering, you will receive a confirmation email containing information about joining the meeting. Best Practices for a Successful Call: Use a computer or laptop if possible. Works well with Chrome, Firefox, Safari or Edge. A cell phone will make it challenging to participate because you will only be able to see the translation screen or the zoom screen but not both screens at once. Speak slowly and clearly. State your primary language (pause a couple of seconds) To introduce yourself: please say your name, country, person with OCNDS’s name and age, 1 challenge and 1 success (up to 1 minute) Think about what you will say before speaking to help with ease of translation. Make sure you are in a quiet place so the translation technology can hear you. Try to avoid having music in the background. Avoid talking over other speakers. Stay on mute when not speaking. Privacy, confidentiality, and safety are of the utmost importance during these family Zoom calls. The meeting will last for 90 minutes.
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