Be a Legislative Advocate

You can help us build awareness of 22 by reaching out to your elected leaders at the local, state and federal government levels.

Here are some steps you can follow as a Legislative Advocate for 22q!:

1. Research who your local government representative or Senator is in your area. You can use the tool HERE to find your representative by entering your mailing address.
2. Contact your elected leader via email or phone and ask if they would be willing to talk with you about 22q11.2 differences.
3. Use this Fact Sheet during your conversation that includes important information on 22q. Include legislative issues here for advocacy work.
4. Share your story with us! Email us at info@22q.org. We’d love to know who you met with and how your conversation went.

Legislative Advocacy Day

22q Legislative Advocacy Day will take place on November 22, 2021! Help pass a resolution and create a 22q Awareness Day in your Community!

Follow the steps below to learn more about reaching out to your elected leaders and creating a proclamation in your community. Feel free to reach out and build relationships with your local officials on Advocacy Day or at any time of year.

Here are some steps you can follow as a Legislative Advocate for 22q!:

1. Research who your local government representative or Senator is in your area. You can use the tool HERE to find your representative by entering your mailing address.
2. Contact your elected leader via email or phone and ask if they would be willing to talk with you about 22q11.2 deletion syndrome and about declaring November 22nd as 22q Awareness Day in your city, town or region.
3. Share this Draft Resolution with your elected leader, which includes language on making this proclamation in your community.
4. Make sure to share the International 22q11.2 Foundation address at 22q.org if they have additional questions about the condition.
5. Use this Fact Sheet during your conversation that includes important information on 22q that you can use in your discussion.
6. Follow up to make sure they received your email and be sure to ask to see if you can help with any more information.
7. Share your success story with us! Email us at info@22q.org and we will add you to our list of towns, states, regions or countries with resolutions that have been passed! Send us a photo of the declaration and you with your lawmakers, if you have a photo and we will post them throughout the year!

Good luck and great work you are truly helping to create awareness in your community!

Regions with resolutions passed:

• Alabama – Special thanks to Stacy Kotila
• Mississippi – Special thanks to Rebecca Osberg
• Missouri – Special thanks to Heather Abbott & Debbie Yost
• North Carolina – Special Rebecca Osberg
• Pennsylvania – Special thanks to Hannah Schilling
• Texas- Special thanks to Twana Wilson and her son Kaymon who was able to speak along side his mom to the local City Council of Beaumont and receive a proclamation for 22q11.2 Awareness Day to be recognized during the month of November.

The Adam Aelick Advocacy Award

Adam Aelick (1998 – 2020) was a dedicated advocate for 22q11.2 deletion syndrome (22q). Even as he faced many physical and mental challenges, he encouraged everyone to #thinkpositive. A true 22q warrior, Adam actively spread hope and awareness to his large following on social media and worked tirelessly to bring the 22q community together.

In memory of Adam’s far-reaching and inspiring work, the International 22q11.2 Foundation has established the Adam Aelick Advocacy Award. The award honors patients and family members who make a significant impact in advocacy about 22q11.2 deletion and/or duplication syndromes. Honorees will receive a plaque of recognition from the Foundation.

Award eligibility, nomination, and selection

Participate in the Adam Aelick Advocacy Bracelet Fundraiser

For more information on Adam Aelick, Click here.