Expressing support for designation of September 2019, as "National Dystonia Awareness Month" and raising awareness and understanding of the disorder of dystonia.

IV 116TH CONGRESS 1ST SESSION H. RES. 557 Expressing support for designation of September 2019, as ‘‘National Dystonia Awareness Month’’ and raising awareness and understanding of the dis- order of dystonia. IN THE HOUSE OF REPRESENTATIVES SEPTEMBER 13, 2019 Mr. LEVIN of Michigan (for himself, Mr. SMITH of New Jersey, Ms. SCHA- KOWSKY, and Mr. FITZPATRICK) submitted the following resolution; which was referred to the Committee on Energy and Commerce RESOLUTION Expressing support for designation of September 2019, as ‘‘National Dystonia Awareness Month’’ and raising awareness and understanding of the disorder of dystonia. Whereas dystonia is the third most common movement dis- order, affecting no fewer than 250,000 people in the United States and millions worldwide; Whereas dystonia is a neurological disorder presenting in var- ious forms, characterized by involuntary muscle contrac- tions causing abnormal, often repetitive movements and postures; Whereas symptoms of dystonia may impede the ability to— (1) walk (as in generalized dystonia or limb dysto- nia); VerDate Sep 11 2014 21:16 Sep 13, 2019 Jkt 089200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6300 E:\BILLS\HR557.IH HR557 kjohnson on DSK79L0C42 with BILLS 2 •HRES 557 IH (2) control the posture of the head (as in cervical dystonia); (3) speak (as in spasmodic dysphonia or oromandib- ular dystonia); (4) see (as in blepharospasm); and (5) write (as in hand dystonia); Whereas there are limited treatments for dystonia, and there is currently no cure; Whereas dystonia is commonly misdiagnosed, delaying access to appropriate medical care for those affected; Whereas trauma like that experienced by military service- members can lead to the onset of dystonia; Whereas countless friends, loved ones, spouses, and care- givers must shoulder the physical, emotional, and finan- cial burdens that dystonia causes; Whereas the severity of the symptoms of dystonia and the limited public awareness of the disease cause many pa- tients to be isolated; Whereas National Dystonia Awareness Month will raise pub- lic awareness and understanding of the disorder of dystonia, a disorder affecting people of all ages, races, ethnicities, genders, and backgrounds; Whereas National Dystonia Awareness Month will also foster understanding of the impact the various forms of dystonia have on those affected and their families; Whereas the dystonia community is uniting to cooperate on awareness efforts throughout September; and Whereas the Benign Essential Blepharospasm Research Foundation, the Dystonia Medical Research Foundation, the National Spasmodic Dysphonia Association, and the VerDate Sep 11 2014 21:16 Sep 13, 2019 Jkt 089200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6300 E:\BILLS\HR557.IH HR557 kjohnson on DSK79L0C42 with BILLS 3 •HRES 557 IH National Spasmodic Torticollis Association are dedicated to— (1) conducting research to find treatments and a cure for dystonia; (2) fostering public awareness and understanding of the disorder; (3) educating patients and their families about dystonia to improve their treatment and care; and (4) providing support and encouraging people to be- come advocates, including by sponsoring annual patient education conferences, school-based educational pro- grams, and local events to raise funds for dystonia re- search, education, advocacy, and awareness: Now, there- fore, be it Resolved, That the House of Representatives— 1 (1) supports the designation of ‘‘National Dys- 2 tonia Awareness Month’’; 3 (2) supports the goals and ideals of National 4 Dystonia Awareness Month to raise public awareness 5 and understanding of dystonia; 6 (3) recognizes the need for additional research 7 to find a cure for all forms of dystonia; and 8 (4) encourages all people in the United States 9 and interested groups to support National Dystonia 10 Awareness Month through activities to promote pub- 11 lic awareness of dystonia and foster the under- 12 VerDate Sep 11 2014 21:16 Sep 13, 2019 Jkt 089200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\HR557.IH HR557 kjohnson on DSK79L0C42 with BILLS 4 •HRES 557 IH standing of the impact of dystonia on patients and 1 their families. 2 Æ VerDate Sep 11 2014 21:16 Sep 13, 2019 Jkt 089200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6301 E:\BILLS\HR557.IH HR557 kjohnson on DSK79L0C42 with BILLS