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Dystonia Medical Research Foundation
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Volunteers Needed for Online Research Survey: University of Tennessee Health Science Center is continuing to conduct a survey: “Reproductive Factors & Cervical Dystonia.” Researchers are conducting an online research study related to the association of reproductive, hormonal, and environmental factors with cervical dystonia. Your participation will require about 30 minutes and involves completing an anonymous one-time online survey. To participate, you must have been diagnosed with cervical dystonia, be 18 years of age or older, and have access to the internet. ALSO, the investigators request that you ask two or more biologically-unrelated individuals (such as friends and co-workers) of the same gender and approximate age as you to also complete the questionnaire. This is a very important component of the study. Please visit https://www.surveymonkey.com/s/7KY7FCF to complete the survey. This research project has been reviewed and approved by the UTHSC Institutional Review Board. Thank you for your support!
Web survey powered by SurveyMonkey.com. Create your own online survey now with SurveyMonkey's expert certified FREE templates.
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Join us for ‪#‎Dystonia‬ Advocacy Day: It is more important than ever that Members of Congress are educated about what dystonia is and how they can help. The DMRF serves as the organization responsible for coordinating the annual advocacy activities of the five groups partnered in the Dystonia Advocacy Network (DAN), including Advocacy Day, scheduled for April 14 - 15, 2015 in Washington, DC. The 2015 legislative agenda will be focused on expanding dystonia research opportunities including support for the Dystonia Coalition through the National Institutes of Health and also pursuing funding through the Department of Defense. Access to care is also a priority issue and it is important for legislators at the federal and state levels to hear from patients how inadequate reimbursement is limiting or preventing treatment for dystonia. The DMRF is proud to work with the Benign Essential Blepharospasm Research Foundation (BEBRF), DySTonia, Inc., National Spasmodic Dysphonia Association (NSDA) and National Spasmodic Torticollis Association (NSTA) on these important activities. To register for 2015 Advocacy Day, visit: http://goo.gl/vPbcDx . Questions? Contact the DMRF at 800-377-3978 or dystonia@dystonia-foundation.org‪#‎dystoniaawareness‬ ‪#‎dystoniaadvocacy‬
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The Spring Dystonia Dialogue will be published in a couple weeks and is packed with information. Learn about the DMRF’s latest drug development efforts, get clarity on common misconceptions about dystonia, hear from some of the very earliest dystonia patients to have deep brain stimulation (DBS), and more. Be sure to renew your DMRF membership to make sure you receive your three print issues a year: www.dystonia-foundation.org/membership. ‪#‎dystonia‬ ‪#‎dystoniaawareness‬
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The DMRF was proud to feature young #dystonia advocate Jacob Stone in the last issue of the Dystonia Dialogue for his efforts to raise awareness and funds for research toward a cure. Cheers to Jacob and his family for this article in the St. Louis Jewish Light! #dystoniaawareness
Jacob Stone, United Hebrew Congregation
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#Dystonia awareness all-star Pat Brogan shares his story with SSPTV.com to promote awareness and provide hope to everyone coping with this life-changing disorder. Pat is hosting the 2nd Annual MS Meets Dystonia Golf Tournament on June 14, 2015 at Sand Springs Country Club in Drums, PA in support of research and programs. Watch: http://www.ssptv.com/coach-pat-brogan-hazleton-red-devils-penn-state-soccer/ #dystoniaawareness
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Get the year off to a good start by learning about #dystonia and meeting others in the community. DMRF support groups are meeting soon in greater Atlanta, Greenwich CT, greater Detroit, South Bend IN, Boca Raton FL, and San Diego. For more info: http://www.dystonia-foundation.org/calendar
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Good as many are not aware how damaging painful dystonia gets if left untreated. It's wrong and cruel. As Have secondary generalized dystonia. Need botox nerve, blocks very much so.
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It’s Complicated: Dystonia is a neurological disorder that occurs with a variety of symptoms, characteristics, and causes. Incorrect information about ‪#‎dystonia‬ is easy to find, not just on the internet but in media stories and even from sources that claim to be authorities on dystonia. It can be challenging to identify credible sources for information. In this article we clarify several common misunderstandings about dystonia: http://goo.gl/2g5YB8 ‪#‎dystoniaawareness‬
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The oral medications most frequently prescribed to treat ‪#‎dystonia‬ are ironically those with some of the highest incidence of intolerable side effects, which limit their use. The Dystonia Medical Research Foundation and Cure Dystonia Now are collaborating to co-support a research investigation that may lead to a new dystonia drug. A team of investigators is exploring whether a drug called AZD1446 could potentially provide relief for dystonia patients without the unintended effects frequently caused by existing pharmacological therapies. To read more, visit: http://goo.gl/mSq0Jr Your support of the DMRF makes these efforts possible, so thank you for all that you do to help the DMRF pursue its mission for a cure!
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Join us for ‪#‎Dystonia‬ Advocacy Day: It is more important than ever that Members of Congress are educated as to what dystonia is and how they can help. The DMRF serves as the organization responsible for coordinating the annual advocacy activities of the five groups partnered in the Dystonia Advocacy Network (DAN), including Advocacy Day, scheduled for April 14 - 15, 2015 in Washington, DC. The 2015 legislative agenda will be focused on expanding dystonia research opportunities including support for the Dystonia Coalition through the National Institutes of Health and also pursuing funding through the Department of Defense, where past legislative successes have provided millions of dollars in critical funds that were previously unavailable to dystonia researchers. Access to care is also a priority issue for the DAN and it is important for legislators at the federal as well as state levels to hear from patients how inadequate reimbursement is limiting or preventing treatment for dystonia. The DMRF is proud to work with the Benign Essential Blepharospasm Research Foundation (BEBRF), DySTonia, Inc., National Spasmodic Dysphonia Association (NSDA) and National Spasmodic Torticollis Association (NSTA) on these important activities. To register for 2015 Advocacy Day, visit: http://goo.gl/vPbcDx . Questions? Contact the DMRF at 800-377-3978 or dystonia@dystonia-foundation.org‪#‎dystoniaawareness‬ ‪#‎dystoniaadvocacy‬
Thank you for your interest in participating in 2015 Advocacy Day. Advocacy Day will take place April 14-15 at the St. Gregory Hotel in Washington, D.C.. Please fill out the form below to complete your registration. Name*. First Name*. Last Name*. Address* Address Line 1* Address Line 2 ...
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If you are between the ages of 20-35 and committed to making a difference in the #dystonia community, apply for the 2015 Douglas Kramer Young Advocate Award. Eligible candidates must be interested and available to work with the DMRF to support legislative advocacy efforts at the Federal and State levels. Recipients will serve as ambassadors to further engage others in the dystonia community in this important program. Awardees will receive support to attend the annual Dystonia Advocacy Network’s Advocacy Day in Washington, DC, April 14-15, 2015. Applications are due Friday, February 27, 2015. To complete the application, visit: http://goo.gl/P4hnJI
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Get your tickets early! The #Dystonia Support & Advocacy Group of San Diego County presents Grammy Award-winning recording artist Juice Newton performing a benefit concert for dystonia on Thursday, October 1, 2015 at 8:00 pm. (Doors open at 6:00 pm.) Juice is known for such hits as “Queen of Hearts,” “Angel of the Morning,” and “The Sweetest Thing” among many others. The event will take place at Martini’s Above Fourth (3940 Fourth Ave., 2nd Floor, San Diego). Tickets are $20/Reserved Seating and $30/Premium Seating (plus $15/person drink/food minimum). To purchase tickets go to: http://goo.gl/FE6Woi. All proceeds will be divided between the Dystonia Medical Research Foundation and the National Spasmodic Dysphonia Association to fund dystonia research. For additional information or questions (not ticket purchases, see above for ticket info) contact Martha Murphy at mmurphy582@gmail.com or Paul Fowler at jnfc@juicenewtonfanclub.com
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As part of the DMRF’s ongoing efforts to accelerate the development and discovery of new #dystonia drugs, Addex Therapeutics and DMRF have announced a partnership to explore the drug dipraglurant for treatment of dystonia. Dipraglurant is one of Addex’s lead products and has shown promise in the treatment of levodopa-induced dyskinesia and dystonia in Parkinson’s disease. The drug also normalizes the effects of the TOR1A/DYT1 dystonia mutation in the brains of mice. DMRF and Addex are teaming up to identify opportunities to further develop this drug. To read more about this collaboration, visit http://goo.gl/fuKHrF
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People
In their circles
33 people
Have them in circles
79 people
Julie Chappuis's profile photo
Jessica Feeley's profile photo
Moon Amoore's profile photo
Sara Ibrahim's profile photo
The Community Foundation Serving Boulder County's profile photo
Big Step Marketing's profile photo
Mikey Maddog (maddogmikey)'s profile photo
behavenet's profile photo
Richard Stuart's profile photo
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312-755-0198, 800-377-3978
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The DMRF serves individuals and families affected by all forms of dystonia.
Introduction

Our mission is to advance research for improved dystonia treatments and ultimately a cure, to promote awareness and education, and to support the needs and well being of affected individuals and families.

Founded in 1976, the DMRF is a 501(c)3 non-profit organization dedicated to serving all people with dystonia and their families. The DMRF has grown from a small family-based foundation into a dynamic membership-driven organization led by a volunteer Board of Directors and network of support leaders with personal connections to dystonia. Because dystonia hits so close to home for our directors and volunteers, the DMRF leadership is motivated by an unrelenting drive to find a cure and an unwavering commitment to serving people affected by dystonia.