State Proclamation Project

Leukodystrophy Awareness Monthand Newborn Screening Awareness Month – is celebrated in September each year.

One way you can help increase awareness of Leukodystrophy is by requesting that your state officially declare September to be Leukodystrophy Awareness Month!

A proclamation is purely ceremonial, but it can be a great way to get the word Leukodystrophy in the minds of stakeholders in your state, get media coverage of your story, and spread awareness on social media!

And, you will usually receive a paper copy of the proclamation to keep:

Newborn screening awareness Month

If you’d like to submit a proclamation request for your state, follow the three simple steps below. Reach out if you need assistance!

Step One

Find your state’s info

    • Click on the button below to find the link to your state, when to submit, etc.
    • Each state has different timing requirements, so be sure to note when the best time is for submission.

Step Two

Submit the request.

    • Your state’s website will have instructions to follow for submitting the request
    • Click the link below for the sample text you can simply copy and paste into the form!

Step Three

Let people know about it!

  • If your request is granted, post pictures of the proclamation on social media!
  • Reach out to local media to tell your story!
  • Let us know that it was received by commenting on the spreadsheet or sending us a note!

3-Hydroxy-3-Methylglutaric Aciduria
3-Methylcrotonyl-CoA Carboxylase Deficiency
Argininosuccinic Aciduria
Beta-Ketothiolase Deficiency
Biotinidase Deficiency
Carnitine Uptake Defect
Citrullinemia, Type I
Classic Galactosemia
Classic Phenylketonuria
Congenital Adrenal Hyperplasia
Critical Congenital Heart Disease
Cystic Fibrosis
Glutaric Acidemia, Type I
Hearing loss
Holocarboxylase Synthetase Deficiency
Isovaleric Acidemia
Long-Chain L-3 Hydroxyacyl-CoA Dehydrogenase Deficiency
Maple Syrup Urine Disease
Medium-Chain Acyl-CoA Dehydrogenase Deficiency
Methylmalonic Acidemia (Cobalamin Disorders)
Methylmalonic Acidemia (Methymalonyl-CoA Mutase Deficiency)
Primary Congenital Hypothyroidism
Propionic Acidemia
S, Beta-Thalassemia
S, C Disease
Severe Combined Immunodeficiency
Sickle Cell Anemia
Trifunctional Protein Deficiency
Tyrosinemia, Type I
Very Long-Chain Acyl-CoA Dehydrogenase Deficiency