World FSHD Awareness Day

World FSHD DayAt around 2:02pm on June 20, 2016 at Seattle City Hall, a proclamation signed by Seattle Mayor Ed Murray and the Seattle Council Members was presented declaring this day to be FSHD Awareness Day. Among other things, the proclamation recognizes the work of dedicated researchers at the University of Washington, the Fred Hutchinson Cancer Research Center, and the Seattle Children's Hospital. Terry & Rick Colella, along with a host of supporters, attended the council meeting. Council Member Sally Bagshaw spoke on the proclamation, the important work that local researchers have done, making Seattle a leading center for FSHD research worldwide, and then presented the document to Terry & Rick as representatives of Friends.

Video of the session is available on the Seattle Channel website. Refer to time marks 2:00 to 7:50.

Terry and Rick Colella receive Proclamation from Sally BagshawU.S. Senator Maria Cantwell also has written an pdfIcon open letter expressing her support of FSHD research, and ongoing support for medical research via then National Institutes of Health (NIH), an extremely important part of all medical research in the U.S. Also mentioned was her support for the removal of all pre-existing conditions clauses in insurance policies, a very important part of the the ACA for those with FSHD.

World FSHD Awareness Day - Seattle Proclamation