Rare Disease Report

Boston Seeing Red on Sept 7th for Duchenne Awareness Day

AUGUST 31, 2017
James Radke
September 7th is World Duchenne Awareness Day and to help celebrate the event, the Jett Foundation is hosting a celebration at the Royal Sonesta Hotel that evening. 

The celebration begins at 6:30 with appetizers and cocktails followed by a short speaking program with rare disease thought leaders and patient advocates.
The speakers include:
  • Michael Counterman, Inspirational speaker, young man with Duchenne and intern at Solid BioSciences 
  • Dr. Anthony Monaco, President, Tufts University
  • Tim Boyd, Director of State Policy, NORD
  • Bob Coughlin, President, Mass Biotechnology Council
To help raise awareness elsewhere, several bridges, buildings, and landmarks will be lit in red to commemorate Duchenne muscular dystrophy. Around Boston, some of the red colored landmarks will include Zakim Bridwage, TD Garden and City Hall.

Also do his part to raise awareness will be chef and TV personality Paul Wahlberg, who will donate part of the profits from 4 Wahlburgers restaurants (in Hingham, Fenway, Lynnfield and Logan airport) to the Jett Foundation.

For more information, visit https://www.jettfoundation.org/wdad/

The Jett Foundation is a non-profit organization focused on raising awareness of Duchenne muscular dystrophy as well as providing support for families, physically, intellectually, emotionally, and financially, affected by this rare degenerative disease.

Some of the programs the organization is involved with include Camp Promise, a summer camp for children and adults with neuromuscular disorders, and the Jett Giving Fund, which assists families by purchasing unaffordable but vital medical and accessibility equipment. That latter program has already provided 6 families with 6 accessible vans in the past 6 months.

Duchenne muscular dystrophy, commonly referred to as DMD, is a degenerative muscle disease due to a person having low levels of the protein dystrophin, which acts as a shock absorber for muscles. Without dystrophin, the muscles slowly die. Symptoms begin in boys around the age of 4 or 5, and by the time they are in their teens, they are generally non-ambulatory. Most patients with Duchenne muscular dystrophy do not live past their early 20s without treatment.

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