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Dystonia Medical Research Foundation
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Good news! Senator Jeff Merkely from Oregon has agreed to sponsor a sign-on letter to keep ‪#‎dystonia‬ in the Department of Defense (DOD) Peer-Reviewed Medical Research Program. Earlier this week we asked you to contact your US Representative, and now we need you to contact your two Senators and encourage them to show their support. Please contact your Senate offices before the end of this Friday, March 20. For simple instructions on what to do, visit: http://goo.gl/cBFNZd Thank you for considering helping with this important effort. ‪#‎dystoniaawareness‬
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Ashlyn Lacey, a 12-year-old Missouri girl with #dystonia, was provided with a new iPad through a campaign designed to raise money to find a cure for the disorder. It was a surprise for Ashlyn when she was presented with the iPad by Matina Koronis-Koester, president and CEO of St. Louis-based Digital Partners Incorporated (dpi), which recently created, Move for Dystonia, a campaign to benefit the Dystonia Medical Research Foundation. Many thanks to dpi for their generous support and special concern for children with dystonia! To read more: http://goo.gl/vgQvCN
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A number of recent studies that make important contributions to what is understood about ‪#‎dystonia‬ would not have been possible if volunteers had not decided in advance to donate their brains to research. Brain donation is a way to contribute to research in a critically important way that supports researchers working today and in the future. To learn more, visit http://goo.gl/PgegeD
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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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ACTION ALERT: Request that House Members sign on to letters to keep ‪#‎dystonia‬ in the DOD Peer-Reviewed Medical Research Program. Deadline to act is this Friday, March 20. For simple instructions on how to help, go to: http://goo.gl/cBFNZd Please share to protect critical federal dystonia research funding! ‪#‎dystoniaawareness‬
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Eagle Rare Kentucky Straight Bourbon Whiskey has named Melissa Phelps the winner of the 2015 Rare Life Survival Award. Eagle Rare will donate $5,000 to Phelps’ charity of choice, Dystonia Medical Research Foundation. Many congratulations and thanks to Melissa—and to all of you who voted for her story. For more information about this exciting accomplishment, visit: http://goo.gl/pxfubq ‪#‎dystonia‬ ‪#‎dystoniaawareness‬
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Congrats Melissa and thanks for all the hard work and promotion that you do bringing awareness to Dystonia! #Dystonia   #DystoniaAwareness  
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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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People
In their circles
33 people
Have them in circles
85 people
behavenet's profile photo
Sarah Jones's profile photo
Crystal Michelle's profile photo
reena singh's profile photo
UF Health Center for Movement Disorders & Neurorestoration's profile photo
Maria Ellison's profile photo
MaryRae Nee's profile photo
julie thompson's profile photo
Gaudeamus - The academic network for publishing in journals'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.