Legislative Advocacy

Declare November 22nd for 22q11.2!

Please help us create 22q11.2 Deletion and Duplication Awareness Days around the world! Help designate November 22nd as “22q11.2 Awareness Day” in your state, region or country.

Here are the steps:

1. Research who your local government representative or Senator is in your area.

2. Contact them via email or phone to ask if they would be willing to help you declare November 22nd as a special awareness date in your state or region (and explain a little bit about 22q11.2 deletion or duplication to them.)

Here are some talking points for 22q11.2 deletion:

  • The most common genetic syndrome that you have never heard of. Almost as common as Down syndrome
  • very widely under-diagnosed
  • The 2nd most common chromosome difference after Down syndrome
  • The most common cause of palatal differences
  • The 2nd most common cause of heart defects and developmental delay after Down syndrome
  • A common cause of medical problems in children like scoliosis, trouble fighting infection, differences in calcium and thyroid, and difficulty with feeding and swallowing
  • A common cause of ADHD, anxiety, autism and learning differences
  • Not all people have the same findings – some have very few
  • you need to know about it
  • early diagnosis is important
  • It is not something that is “running in the family”
  • It is nothing that the parents did or didn’t do to make it happen
  • learn more at 22q.org

Here are some talking points for 22q11.2 duplication: (Coming soon)

3. Get their email address and send the document attached here as a sample of the possible “resolution” that they could use. Don’t forget to give them the International 22q11.2 Foundation website, should they have any additional questions about the condition.

4. Follow up to make sure that they received your email and be sure to ask to see if you can help with any more information. (you are always free to give them our contact info, should they need more information or have any additional questions info@22q.org)

5. Let us know when you have set it up and we will add you to our list of state, region or country with resolutions that have been passed! (We will update the list as we begin getting commitments!) 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!

If you have helped to pass a resolution in your region or state please contact us info@22q.org so we may add you to our list.

Regions to date with resolutions passed:

Alabama –

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

If you have helped to pass a resolution in your region or state please contact us info@22q.org and we will happily add you to the above list.

 

 

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