Understanding
Okur-Chung Neurodevelopmental Syndrome
Securing Proclamations
Guide to Securing a Proclamation for International OCNDS Awareness Day
One way we strive to bring awareness to Okur-Chung Neurodevelopmental Syndrome (OCNDS) is by securing proclamations for International OCNDS Awareness Day, which falls on April 5th each year.
What is a Proclamation?
A proclamation is an official declaration by a government official or body to recognize a specific day, event, or cause. Your efforts to secure a city, county, state, or municipality proclamation are crucial in bringing attention to the challenges faced by those affected by OCNDS and in fostering a supportive community.
In the past, we have secured proclamations in:
- St. Louis County, Missouri, issued by the St. Louis County Executive
- City of St. Louis, Missouri, issued by the Mayor
- State of Missouri, issued by the Governor
- Union County, Pennsylvania
- State of Pennsylvania, issued by the Governor
- Nova Scotia, Canada, signed by Premier
- City and County of Denver, Colorado, issued by the Mayor
- State of Colorado, issued by the Governor
- State of Wyoming, issued by the Governor
To help you with this important task, we’ve prepared a few resources:
1. Draft Proclamation Request Letter:
Use this as a template when submitting your request. It outlines the purpose of the proclamation and key information about our foundation and OCNDS.
2. “Whereas” Statements:
These highlight the most important aspects of OCNDS and its impact. Some officials may limit the number of "Whereas" statements you can include, so you can either select the most relevant ones or ask us for help in choosing.
Steps for Securing a Proclamation
01
Find the Right Office:
a. Start Local: Check with your city or county first, as they are often more accessible.
b. Visit Official Websites: Look for a section on proclamations or use the search feature to find relevant information.
c. Contact the Office: If you can’t find information online, call or email the city, county, municipality, mayor’s or governor’s office, City Hall, or your local council member to ask about the process.
02
Submit Your Request:
a. Use the draft proclamation letter and "Whereas" statements provided. Follow the specific submission guidelines for the official’s office, which may involve, submitting online, mailing or delivering the request in person.
03
Follow Up:
After submitting your request, follow up to ensure it was received and ask about the status. Persistence is important, but always be polite.
04
Promote the Proclamation:
Once secured, let us know and we will promote the proclamation widely through social media, local news, and community events to raise awareness.
Tips for Success
1.
Personalize:
Feel free to adjust the letter and "Whereas" statements to reflect your connection to OCNDS.
2.
Engage Others:
Involve your community in advocating for the proclamation. The more support, the greater the impact.
3.
Show Gratitude:
Regardless of the outcome, always thank the officials and their staff for their time. A little appreciation can go a long way.
If you have any questions or need assistance, please reach out. We are here to support you every step of the way.
Thank you for your commitment to making a difference in the lives of those affected by OCNDS. Your work is truly invaluable.
“Using the template for the OCNDS awareness day proclamation made the process easy and seamless. Something that took such little time made the biggest impact when the city of Denver AND the state of Colorado proclaimed April 5th as OCNDS Awareness Day!”
Amber Reynolds, Mom to Harper & West Coast Regional Ambassador