Instructions

Below is suggested language you can use to ask your local mayor or state governor to declare September 7, 2018, World Duchenne Awareness Day in your community. We encourage you to make the message your own, sharing your family’s journey with Duchenne. This will enhance the possibility of successfully getting a proclamation.

Pass along your message, along with the sample proclamation language. If you successfully get a proclamation, please share it with the PPMD team so that we can pass it along to the community. Our goal is to have as many states represented as possible on World Duchenne Awareness Day! If you have questions, please do not hesitate to contact Will Nolan, PPMD’s SVP of Communications at will@parentprojectmd.org.

Message

On behalf of my family, and the thousands of other families who have had their lives affected by Duchenne muscular dystrophy, I am writing to request that a proclamation be issued this year for WORLD DUCHENNE AWARENESS DAY, September 7, 2018.

Duchenne muscular dystrophy (Duchenne) is the most common fatal genetic disorder diagnosed in childhood, affecting approximately one in every 5,000 live male births each year. Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures. Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. People with Duchenne typically live into their late twenties.

Duchenne can be passed from parent to child, but approximately 35% of cases occur because of a random spontaneous mutation. In other words, it can affect anyone. Although there are medical treatments that may help slow its progression, there is currently no cure for Duchenne.

As a rare disease, one of our greatest tools in the fight to end Duchenne is raising awareness. With your support in declaring WORLD DUCHENNE AWARENESS DAY on September 7, we can continue to increase public awareness about this fatal disease. Knowledge is power and as a decision maker with the extraordinary reach and respect that your office has, we are confident that this acknowledgement from you will help bring us one step closer to ending Duchenne.

Please find below a draft of a proposed Proclamation for WORLD DUCHENNE AWARENESS DAY on September 7, 2018. You may send the proclamation to:

Parent Project Muscular Dystrophy
Attention: Will Nolan, SVP of Communications
401 Hackensack Avenue, 9th Floor
Hackensack, NJ 07601

On behalf of all families affected by this devastating disorder, thank you for your time and consideration. Together, we will end Duchenne.

Proclamation

WORLD DUCHENNE AWARENESS DAY PROCLAMATION

WHEREAS, Duchenne muscular dystrophy (Duchenne) is the most common fatal genetic disorder diagnosed in childhood, affecting approximately one in every 5,000 live male births each year.

WHEREAS, the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures.

WHEREAS, Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. People with Duchenne typically live into their late twenties.

WHEREAS, Duchenne can be passed from parent to child, but approximately 35% of cases occur because of a random spontaneous mutation. In other words, it can affect anyone. Although there are medical treatments that may help slow its progression, there is currently no cure for Duchenne.

WHEREAS, because it is a rare disease, one of our greatest tools in the fight to end Duchenne is raising awareness.

WHEREAS, on September 7, 2018 the fourth World Duchenne Awareness Day will take place. Duchenne organizations around the world will raise awareness for all people living with Duchenne muscular dystrophy.

THEREFORE I , ________, GOVERNOR for the _________________, do hereby proclaim September 7, 2018: World Duchenne Awareness Day in the _______________________ and encourage the residents of _______________________ to increase their understanding and awareness of Duchenne muscular dystrophy.