[Congressional Record (Bound Edition), Volume 163 (2017), Part 11]
[Extensions of Remarks]
[Page 15175]
[From the U.S. Government Publishing Office, www.gpo.gov]




                  RECOGNIZING DYSTONIA AWARENESS MONTH

                                 ______
                                 

                       HON. JANICE D. SCHAKOWSKY

                              of illinois

                    in the house of representatives

                     Wednesday, September 27, 2017

  Ms. SCHAKOWSKY. Mr. Speaker, I rise today to recognize the month of 
September as Dystonia Awareness Month. I also want to express my 
appreciation to the Farber family--Joel, Harriett and Beth--for their 
tireless work on behalf of those living with dystonia and those who 
care for them. Their work with the Dystonia Medical Research Foundation 
has made important contributions to our awareness of dystonia and the 
need for greater research, and I am proud to have them as my 
constituents.
  Today at least 300,000 people in North America suffer from dystonia, 
a neurological movement disorder that causes muscles to contract and 
spasm involuntarily. Joel and Harriett's daughter Shari--Beth's 
sister--had dystonia. The Farber family not only advocated for her, 
they determined that they would advocate on behalf of the entire 
dystonia community. They reached out to me and so many others to 
explain what is known about the disease, its impacts, and the need for 
expanded medical research and support networks. Over the years, they 
have continued to come to my office and have travelled the country to 
push for action.
  Dystonia affects men, women and children. For most people with 
dystonia, the cause remains unknown and there is currently no cure. 
Dystonia is not usually fatal, but it is a chronic disorder producing 
symptoms that vary in degrees of frequency, intensity, disability, and 
pain depending on the type of dystonia. The inability to predict or 
control the movements of the legs, arms, hands, neck, shoulders, face, 
eyelids, jaw, tongue, or vocal cords has a profound impact on an 
individual's life.
  Dystonia may be inherited or caused by specific factors such as 
certain medications or traumatic injury, particularly traumatic head/
brain injuries. Our men and women in uniform face a disproportionate 
risk of developing dystonia as a result of injuries sustained during 
their military service.
  The Dystonia Medical Research Foundation, which works to raise 
awareness of dystonia, is a nationwide organization that has served the 
community for more than 40 years. The Dystonia Medical Research 
Foundation provides the dystonia community with support, education, 
advocacy, and the promotion of research into the causes of and care of 
dystonia.
  I call on my colleagues to recognize the goals and ideals Dystonia 
Awareness Month by supporting federal activities that improve lives of 
patients impacted by dystonia including research programs at the 
National Institutes of Health. We need to improve medical research and 
we need to make sure that those living with dystonia receive the 
quality health and caregiving services they deserve.

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