Announcements

$5-CURE-FOR-DYSTONIA CHALLENGE. Please consider participating in this important campaign to raise funds for dystonia research that was created by Jason Dunn (who has generalized dystonia) and his friend Mike Delise. All donations will be directed by the DMRF to dystonia research. Learn more and watch powerful videos by going to www.5dollarcure.com

***LISTEN TO THE INTERVIEW THAT BILLY McLAUGHLIN & MARTHA DID WITH DREW SCHLOSBERG FOR HIS UT COMMUNITY SPOTLIGHT SHOW ON 9/16/16 BY CLICKING HERE

ARTICLE ON OUR SUPPORT GROUP & OUR 30 YEAR ANNIVERSARY IN THE SPRING 2017 ISSUE OF THE DYSTONIA DIALOGUE, PAGES 14-15.

https://www.dystonia-foundation.org/images/uploads/DMRF_DD_Spring_2017.pdf

If you shop on AmazonSmile, you can choose the DMRF as your charity and they will receive .5% of your purchases. To find out more, visit https://smile.amazon.com/

**IF YOU WOULD LIKE TO VIEW DR. DAVID PETERSON'S SLIDE PRESENTATION FROM SAT., 1/21/17 ON DECIPHERING DYSTONIA & THE LATEST IN RESEARCH, CLICK HERE

**DVD's OF DR. STEVEN HICKMAN'S EXCELLENT PRESENTATION ON MINDFULNESS ARE AVAILABLE FOR $10. PLEASE CLICK HERE FOR MORE INFORMATION. YOU CAN ALSO NOW VIEW HIS ENTIRE PRESENTATION ONLINE BY CLICKING HERE

**DVD's OF DAVID WEIL'S INFORMATIONAL PRESENTATION FROM 9/17/16 ON HEALTH INSURANCE, MEDICARE, MEDI-CAL, SUPPLEMENTAL PLANS, ETC. ARE AVAILABLE FOR $10. PLEASE CLICK HERE FOR MORE INFORMATION. YOU CAN ALSO VIEW HIS SLIDE PRESENTATION IN PDF FORM BY CLICKING HERE

OUR BENEFIT CONCERT WITH GRAMMY AWARD-WINNING RECORDING ARTIST JUICE NEWTON ON 10/1/15 WAS A SUCCESS! OUR PROCEEDS TOTAL $9,948.00! THESE FUNDS HAVE BEEN EQUALLY DIVIDED BETWEEN THE DMRF & THE NSDA. THANKS TO EVERYONE WHO ATTENDED THE SHOW OR WHO MADE A DONATION AND THANKS TO JUICE NEWTON, HER BAND, PAUL FOWLER & MARTINI'S ABOVE FOURTH! WE HAVE RAISED A GRAND TOTAL OF $44,745.94 FROM THE 4 BENEFITS CONCERTS WE HAVE HELD IN 2006, 2009, 2012 AND 2015!!!

For information, handouts and special offers shared by Cynthia Clark, Clinically Certified Hypnotherapist, Reiki Master & Essential Oils Educator at our meeting on 10/24/15 please click HERE If you would like to order a DVD of her presentation for $10, please click HERE

Check out the article on Medical Uses for Botulinum Toxin in A Woman's Health magazine that Martha was interviewed for at http://awomanshealth.com/beyond-botox/

WE VIDEO-RECORDED 6 RECENT MEETINGS. 1) CYNTHIA CLARK ON HYPNOTHERAPY, REIKI & ESSENTIAL OILS, 2) ROSE THOMAS ON ACUPUNCTURE/PRESSURE POINTS/FOOD/NUTRIENTS; 3) BRENT CESARE, DPT ON AYURVEDA, ENERGY & INTEGRATIVE MEDICINE; 4) JENNIFER LOGAN, YOGA THERAPIST/MEDITATION SPECIALIST; 5) DR. DAVID BARBA, NEUROSURGEON DISCUSSING SURGERIES AND 6) DR. HUSSEIN ABDULHADI, PAIN MANAGEMENT SPECIALIST, DISCUSSING METHODS FOR TREATING PAIN. IF YOU ARE INTERESTED IN PURCHASING A DVD OF ANY OF THESE PRESENTATIONS, WE ASK FOR $10 PER DVD TO COVER OUR COSTS. PLEASE CLICK HERE TO CONTACT US FOR MORE INFORMATION.

 

Juice Billy DC
Juice Newton Billy McLaughlin D.C. Hathaway

THE BENEFIT CONCERT WE HELD AT SYCUAN ON 2/19/12 WAS OUR MOST SUCCESSFUL ONE YET. AS OF NOW, WE HAVE RAISED $14,665.54 FOR DYSTONIA RESEARCH TO BE EQUALLY DIVIDED BETWEEN THE DMRF AND THE NSDA!! BIG THANKS TO JUICE NEWTON & HER BAND, TO BILLY McLAUGHLIN & TO D.C. HATHAWAY FOR THEIR GENEROSITY AND ENTERTAINING PERFORMANCES. HUGE THANKS TO PAUL FOWLER WITHOUT WHOM NONE OF OUR CONCERTS WOULD HAVE EVER HAPPENED! ALSO THANKS TO SYCUAN FOR DONATING THEIR BEAUTIFUL THEATRE TO US AND FOR SO MUCH MORE. AND THANKS TO DAVE MASON FROM 105.7 FM THE WALRUS AND TO DREW SCHLOSBERG FROM THE UNION-TRIBUNE FOR THEIR SUPPORT AND PROMOTION OF THIS EVENT. AND THANKS TO ALL OF YOU WHO PURCHASED TICKETS, ENCOURAGED OTHERS TO ATTEND OR WHO MADE DONATIONS!

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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

Juice, Paul & Martha were interviewed on The Dr. Pat Show at http://www.thedrpatshow.com/pastshows.php

Paul & D.C. were interviewed by Roy Butler at http://www.blogtalkradio.com/roybutler/2012/02/11/dmrf-benefit-concert-with-juice-newton-and-friends

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 Max FM emceed the concert and did a great job. You can listen to him on the radio or online at http://www.1057max.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."

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  • 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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**IMPORTANT: If you wish to make a DONATION to support DYSTONIA RESEARCH, please consider donating to DMRF www.dystonia-foundation.org and/or NSDA www.dysphonia.org Our support group is affiliated with both of these non-profit 501 (c)(3) organizations!

 

We record many of our support group meetings and make DVD's available to anyone interested for $10 (which covers our costs). Here is a partial list and please click here to place your order.

Mind/Body Healing Techniques - Brent Cesare, DPT, CHOPRA Center and Zenergy Holistic Physical Therapy (9/29/12)

Voice Disorders/Voice Care - Philip Weissbrod, M.D. & Stephen Goldman, SLP from UCSD (7/21/12)

Introduction to Transcendental Meditation - Jim & Nancy Meade, Directors of the TM Center in San Diego (1/22/11)

Effective Strategies for Managing Chronic Pain - Dr. Hussein Abdulhadi, Alvarado Hospital, Private Practice

Treatments for Dystonia, Including the DBS Surgery - Dr. Irene Oh, The Neurology Center

Mind/Body Health & Wellness - Dr. Valencia Porter, Chopra Center for Wellbeing

Dystonia Update - Dr. Neal Hermanowicz, UC Irvine

Solving the Medication Mystery - Jerry Hammond, Pharmacist & Educator

SOCIAL SECURITY DISABILITY - Anthony DeLellis, Atty. www.delellis.com If you are looking for a Social Security Attorney in your area, contact NOSSCR (The National Organization for Social Security Claimants' Representatives) through their web site at www.nosscr.org or by phoning 1-800-431-2804. They also list the answers to frequently asked questions about SS disability.

Ryan Murphy, and his Media group from Grossmont College produced a compelling 11-minute documentary on Dystonia. The film features interviews with 3 individuals with 3 different types of Dystonia. To watch the documentary click here. If you would like to order a DVD of the documentary for $15.00, please click here