September is traditionally a busy month for the worldwide DMD community.
In 2014, DMD organizations started World Duchenne Awareness Day on Sept. 7 to encourage families affected by the disease to share their stories. The day has grown in importance ever since. Cities around the globe have issued proclamations marking it, people have lit up landmarks in red — the color of the fight against DMD — and thousands have spread the word on social media.
September seemed to be the perfect month to “map out a series of actions everyone in the community can take to raise awareness and funds towards our mission to end Duchenne,” Pat Furlong, the chief executive officer of Parent Project Muscular Dystrophy, said in a press release. September is a month when children head back to school and there is a “need to reach out to teachers and administrators about Duchenne,” she said.
The awareness month comes against a backdrop of “growing global recognition of World Duchenne Awareness Day” and the success of two of her organization’s programs, Run For Our Sons and Coach To Cure MD, which turns 10 this year.
“As we unveil our action calendar over the course of September, you will see that many of the actions are simple and may even be things that you are doing already,” she said. “But we will also be throwing in some new ideas that can help you share your Duchenne journey with those in your community who may not yet understand what a life is like with Duchenne in it. Friends and relatives are always asking, ‘How can I help?’ This September, tell them to join the fight to end Duchenne by taking action.”
To help celebrate the Sept. 7 awareness day, the Jett Foundation is hosting a celebration at the Royal Sonesta Hotel in Cambridge, Massachusetts, beginning at 6:30 p.m., with appetizers and cocktails.
The foundation provides support to families of DMD patients. Its programs include Camp Promise, a summer camp for children and adults with neuromuscular disorders, and the Jett Giving Fund, which offers financial support to families purchasing expensive but vital medicine and equipment.
Rare-disease thought leaders and patient advocates will be part of a short speaking program at the Cambridge event. They will include Michael Counterman, a DMD patient who is an inspirational speaker; Anthony Monaco, president of Tufts University in Boston; Tim Boyd, director of state policy at the National Organization for Rare Disorders; and Bob Coughlin, president of the Massachusetts Biotechnology Council.
As part of September’s DMD events, Paul Wahlberg, the famous chef and TV personality, will donate part of the profits from four of his Wahlburgers restaurants in Massachusetts — in Hingham, Fenway, Lynnfield and Logan International Airport — to the Jett Foundation.