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| Juice Newton |
Billy McLaughlin |
D.C. Hathaway |
BENEFIT CONCERT - BUY YOUR TICKETS NOW FOR OUR BIG BENEFIT CONCERT - JUICE NEWTON & FRIENDS on Sunday, February 19, 2012 at 7:00 p.m. (doors open at 6:00 p.m.). Grammy Award-winning recording artist Juice Newton & her band, talented dystonia-affected guitarist Billy McLaughlin and musician/songwriter D.C. Hathaway will all be performing at SYCUAN CASINO to raise awareness and funds for dystonia! Proceeds from this concert will be used to support critical DYSTONIA RESEARCH and will be equally divided between the DMRF & the NSDA. Ticket prices are $35 and $45 and are available now through SYCUAN at www.sycuan.com/entertainment or in-person at Sycuan's Box Office. Free parking and FREE valet parking. Must be 21 or older with a valid I.D.to attend! Six restaurants on-site at Sycuan. Come early and have a wonderful pre-show dinner! Tell all of your family members & friends!! Check out this wonderful PROMO that our friend, Dave Mason from The Walrus FM Radio 105.7 put together with D.C. Hathaway http://www.youtube.com/watch?v=tLzTKPSwzaQ&feature=player_embedded
Juice Newton has performed in 2 previous benefit concerts for us with the last one in 2009 raising close to $12,000 for dystonia research! Juice is known for such hits as Queen of Hearts & Angel of the Morning. To learn more about Juice Newton visit www.juicenewtonfanclub.com or www.juicenewton.com Billy McLaughlin is a talented solo acoustic guitarist who retrained himself to play guitar with his non-dominant hand after developing focal dystonia in his dominant hand - quite a feat! For more information about Billy McLaughlin visit www.billymclaughlin.com D.C. Hathaway is a musician and member of our local support group who developed Spasmodic Dysphonia affecting his vocal cords which ended his singing career. He is now focusing his attention on songwriting and performing instrumental numbers. To learn more about D.C. visit www.dchathawaymusic.com/
Sycuan is located at 5469 Casino Way, El Cajon, CA 92019. *If you require disabled seating, please contact Erin Miller at Sycuan at 619-445-6002 x1171
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ONLINE RADIO INTERVIEW - Juice Newton, D.C. Hathaway, Paul Fowler & Martha Murphy all participated in an interview with Drew Schlosberg who is the Community & Public Relations Director for UTSanDiego.com This was for his online Community Spotlight program. You can listen to the interview, which is in 2 parts by going to http://wsradio.com/radio_Archives.aspx?id=12220 or clicking on the links below:
PART 1:
http://filesource.abacast.com/wsradio/communityspotlight/011312/segment3011312.mp3
PART 2:
http://filesource.abacast.com/wsradio/communityspotlight/011312/segment4011312.mp3
CLICK HERE to watch the Beery family on CBS The Early Show. They also appeared on Good Morning America on 6/18/11. Their 14 yr. old twins, Alexis & Noah, have Dopa-Responsive Dystonia (DRD) but were intially misdiagnosed with Cerebral Palsy when they were 2. They have now undergone a cutting-edge, gene-sequencing procedure which has helped to create an individualized treatment program to help effectively manage their symptoms! Click here to watch GMA video You can also read about their story in NPR's Health Blog at HERE
Watch the 5-1/2 minute segment on Billy McLaughlin from CBS' The Early Show which aired 5/27/11. D.C. & Henry from our group are also featured! Click here:HERE
If you were not fortunate enough to have attended Billy McLaughlin's amazing concert performance on 3/31 at the Neurosciences Institute, you really missed out on an inspiring evening of entertainment, heart & soul! But you can still purchase CD's and DVD's through Billy's website at http://www.billymclaughlin.com and learn more about his journey with dystonia!
And D.C. Hathaway, who is a member of our support group, also took the stage with Billy to perform a number together and a song on his own and he was great. To learn more about D.C. and to purchase any of his CD's, visit his website at www.dchathawaymusic.com Also check out D.C.'s song about 9/11 called "LEFT BEHIND."
And Dave Mason from 105.7 FM The Walrus emceed the concert and did a great job. You can listen to him on the radio or online at www.walrusfm.com
**If you missed seeing Alex and Montel Williams on The Doctors TV program on 2/9, you can still watch some video clips at www.thedoctorstv.com
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CHECK OUT THE NEW DYSTONIA ADVOCACY COALITION (DAN) WEBSITE BY LOGGING ONTO http://dystonia-advocacy.org/ AND KEEP UP-TO-DATE ON THE LATEST IN LEGISLATIVE ACTIVITIES, ISSUES, FIND OUT HOW TO CONTACT YOUR ELECTED OFFICIALS, ETC.
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Dystonia Coalition Obtains ORD Grant
Unprecedented monies to support dystonia research
The Dystonia Coalition (not to be confused with the Dystonia Advocacy Coalition or DAC) is a collaboration of scientists, institutions, and patient organizations formed to advance the pace of clinical research for the dystonias.
In October, Officials at the Office of Rare Disorders (ORD) at the National Institutes of Health (NIH) announced the funding of a five year award for the Dystonia Coalition to advance clinical research on primary focal dystonias including cervical dystonia, spasmodic dysphonia/laryngeal dystonia, blepharospasm, and others. Leading the Coalition will be H. A. Jinnah, MD, PhD, Professor of Neurology and Human Genetics at Emory University in Atlanta, Georgia.
The $6.2 million award will allow the Dystonia Coalition to cultivate a better understanding of the primary focal dystonias and find better therapies. This includes projects to develop a better understanding of their natural history, establish instruments for monitoring symptom severity in clinical trials, and develop proper diagnostic criteria. The creation of a biorepository to store biological samples to support future research is also planned, which will make these resources available to investigators worldwide.The DMRF will play an integral role by providing logistical and planning support for the Coalition. The DMRF is well-poised to serve in this capacity as it is the largest and most established patient support organization devoted to dystonia.
DMRF Co-Vice President of Science Deb Kilpatrick, PhD, who lives with cervical dystonia says, "The NIH award to form the Dystonia Coalition is a truly landmark event for DMRF, its members, and most importantly, dystonia patients and their caregivers. We should all be very proud about what has been accomplished and enthusiastic about what is to come."
- American Dystonia Society
- Bachmann-Strauss Dystonia & Parkinson Foundation
- Benign Essential Blepharospasm Research Foundation
- DySTonia, Inc.
- Dystonia Medical Research Foundation
- National Spasmodic Dysphonia Association
- National Spasmodic Torticollis Association
- Tyler's Hope for a Dystonia Cure
- We Move
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DYSTONIA INTERNATIONAL PATIENT REGISTRY - If you or any member of your family has tested positive for the DYT1 gene, then you are eligible and encouraged to participate in a patient registry. The Registry is a patient-reported, international, multi-center, disease or condition listing registry for patients and their families who carry the DYT-1 Dystonia gene; no experimental intervention is involved. A listing registry is “Data is collected in a naturalistic manner such that the management of patients is determined by the caregiver and patient together and NOT by the registry protocol.” To learn more and to submit your information to the registry, go to www.dipregistry.com
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