Understanding
Okur-Chung Neurodevelopmental Syndrome
Guidelines for Lighting Up Buildings, Monuments, and Places of Interest for International OCNDS Awareness Day, April 5th
Why Light Up in Our Foundation Colors?
For families affected by Okur-Chung Neurodevelopmental Syndrome (OCNDS), life often involves fighting for recognition and support. Lighting up buildings, monuments, and places of interest globally in our Foundation colors on April 5th provides a beacon of hope and a powerful symbol of love and determination. This act creates a sense of community, showing these families that they are seen, heard, and understood. It amplifies our message of awareness, leading to acceptance, change, and hope.
These light-up events are more than just symbolic; they are a powerful way to raise awareness about OCNDS and rare diseases as a whole. Each new light represents another person or community that becomes aware of OCNDS, potentially leading to greater understanding, support, and research funding.
Thank you for helping us light up the world in honor of those living with OCNDS.
Steps to Request a Light-Up
01
Identify Suitable Locations:
- Research iconic buildings, monuments, or places of interest in your area or country that participate in awareness lighting events.
- Other Suggestions on How to Start Identifying Locations: Use Google to search for “locations that light up for causes.” A list of successful campaigns by other organizations will appear. Review them to see which landmarks and places of interest have participated. Visit the websites of these locations to find their light-up request procedures. This can help you identify opportunities to spread awareness and show your support.
- Consider places that are well-known and have a history of supporting charitable causes.
02
Check Lighting Policies:
- Visit the official website or contact the administration of the selected location to understand their policies and procedures for lighting requests.
- Confirm whether they accept requests from non-profit organizations and if they support the colors requested (Green and Blue).
- Please note that the Foundation does not pay for light-up requests.
03
Submit a Formal Request:
- Some sites may require you to send an email to submit your request, while others will have an online form to complete. Use the template or the information provided below to draft your request.
- Be sure to include the date (April 5th, or alternate dates in April), requested colors, and a brief description of OCNDS and the significance of the awareness day. For more information, see our FAQ.
Template Letter for Light-Up Request
Subject: Request for Special Lighting on International OCNDS Awareness Day – April 5th, 202__
Dear [Name of the Contact Person/Department],
On behalf of the CSNK2A1 Foundation, I am writing to request the lighting of [Name of the Building/Monument] in green and blue on April 5th, 202__, in recognition of International OCNDS Awareness Day.
April 5th holds deep significance for our community, as it marks the anniversary of the first identification of Okur-Chung Neurodevelopmental Syndrome (OCNDS), a rare genetic disorder affecting individuals and families worldwide. This day serves as a vital opportunity to raise awareness of the challenges faced by those living with OCNDS while fostering understanding and support for the broader rare disease community.
Lighting [Name of the Building/Monument] in green and blue, our foundation colors, would be a powerful symbol of hope and unity, not just for OCNDS families but for the millions affected by rare diseases globally. It would shine a light on the importance of equitable access to diagnosis, treatment, and support for individuals and families navigating life with a rare condition.
Since its first identification in 2016, OCNDS has connected families across the globe, creating a strong and resilient community. The syndrome is characterized by significant challenges such as severe speech delays or inability to speak, epilepsy, cognitive impairment, autism traits, and feeding difficulties. Yet, those living with OCNDS are so much more than their diagnosis—they are joyful, loving, and determined individuals who inspire everyone around them.
Our Foundation’s mission extends beyond awareness. Research on OCNDS and the CSNK2A1 gene, which produces the essential CK2 protein, has the potential to impact treatments for a range of other conditions, including Parkinson’s, Alzheimer’s, autism, and cancer. Your participation in this lighting initiative would not only honor those affected by OCNDS but also contribute to a broader movement for progress in rare disease research and advocacy.
We would be deeply grateful for your support in illuminating [Name of the Building/Monument] in green and blue on this important day. Should you require any additional information, please don’t hesitate to reach out.
Thank you for considering our request and your commitment to making a difference.
Warmest regards,
[Your Full Name]
[Your Title]
[Email]
[Cell phone]
After Submitting Your Request
1. Follow Up:
- If you don’t hear back within a couple of weeks, follow up with a polite reminder.
- Keep a record of your correspondence for future reference.
2. Notify the Foundation:
- Email info@csnk2a1foundation.org with the details of your submission, including the location and date of the proposed light-up. This helps us avoid duplicate requests and ensures coordinated efforts.
3. Pictures of the Light Up:
- If your request is accepted, please notify the foundation so we can promote via social media and help arrange for someone to take a photo.
Frequently Asked Questions for Requesting Light-Ups for OCNDS Awareness Day
1. What is the CSNK2A1 Foundation’s mission?
We are focused on finding a cure for Okur-Chung Neurodevelopmental Syndrome and ensuring affected individuals have the opportunities and supports necessary for happy and full lives.
2. Where will the illuminations be promoted?
The light-ups will be featured on:
- Social media (Instagram, Facebook, LinkedIn, and Twitter)
- Our virtual newsletter
- The CSNK2A1 Foundation website
- Our digital Annual Report - Year in Review
3. What dates should I request for the illumination?
- Preferred date: April 5 (International OCNDS Awareness Day)
- Alternate dates: April 4 or any other date in April
4. What colors should I request for the illumination?
The official CSNK2A1 Foundation colors are green and blue.
- Green:
- Hex: #2c9b66
- Darker green: Hex #0b6b3d, RGB: (47, 155, 102)
- Blue:
- Hex: #1795cf
- Darker blue: Hex #008dce, RGB: (23, 149, 207)
Note: If only one color is permitted, either green or blue is appreciated.
5. What is the prevalence of OCNDS?
OCNDS affects approximately 1 in 100,000 individuals.
6. How many patients have been diagnosed worldwide?
As of January 1, 2025, there are 292 diagnosed patients worldwide.
7. What are the CSNK2A1 Foundation’s social media, website links, and frequently used Hashtags?
- Website: www.csnk2a1foundation.org
- Facebook: CSNK2A1 Foundation
- Instagram: @csnk2a1_foundation
- Twitter: @csnk2a1org
- LinkedIn: CSNK2A1 Foundation
- YouTube: CSNK2A1 Foundation Channel
Hashtags to include in promotions:
#ocnds #csnk2a1 #moveintoaction #timeisnow #BoundlessPossibilities #OCNDSAwareness
8. Which landmarks have participated in past OCNDS light-ups?
United States:
- Niagara Falls
- Skydance Bridge (Oklahoma City, OK)
- The Peace Bridge (Buffalo, NY)
- Terminal Tower (Cleveland, OH)
- Lowry Avenue Bridge (Minneapolis, MN)
- Korean War Veterans Memorial Bridge (Nashville, TN)
- Pennsylvania State Capitol Lieutenant’s Balcony
- Ben Franklin Bridge (Philadelphia, PA)
- James S. McDonnell Planetarium (St. Louis, MO)
United Kingdom:
- Newcastle Civic Centre (Newcastle upon Tyne)
- Council Block A, Dextra Group (Killingworth, North Tyneside)
- Tower 42 (London)
- Meadowhall Shopping Centre (Sheffield)
- OVO Hydro (Glasgow)
- Gateshead Millennium Bridge (Gateshead)
- Glasgow Central Station (Glasgow)
- Liverpool Town Hall (Liverpool)
Canada:
- High Level Bridge (Edmonton)
- Halifax City Hall (Halifax, Nova Scotia)
- Niagara Falls (Canadian Horseshoe Falls illuminated blue at 10 PM)
“Seeing over 10 places across the UK light up in blue and green for OCNDS Awareness Day was such an incredible experience. I never imagined something so simple to organize could feel so powerful. It was easy to do, yet seeing those lights shining made me feel like we were truly making a difference for our community who often feel unseen.”
Claire Whitehill, UK Regional Ambassador & Mom to Kirsty