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Our Group is affiliated with the DMRF Click the logo to go to their site.
Dystonia Support & Advocacy Group of San Diego County

Hello and welcome to the Dystonia Support Group of San Diego County's Web Site. This site will tell you more about our group, upcoming meetings, symposiums, and current events. To navigate this site the links are in categories to help to make it more organized. We hope you enjoy our web site made possible by Ryan Murphy.

NEXT SAN DIEGO SUPPORT GROUP MEETING AT ALVARADO HOSPITAL
DATE: SATURDAY, MARCH 20, 2010 TIME: 1:00-3:00 p.m.

PRESENTER: To be announced.

TOPIC: To be announced.

 
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

HAS DYSTONIA AFFECTED YOUR CAREER? If so, please consider taking this survey at http://www.surveymonkey.com/s/XW65QQX

VERY EXCITING NEWS: 12/21/09 - The Dystonia Medical Research Foundation (DMRF), a proud member of the Dystonia Advocacy Coalition (DAC), is pleased to announce the inclusion of dystonia on the list of diseases eligible for funding through the Congressionally Directed Medical Research Program.  This achievement, reached after several years of tireless, collaborative efforts by the advocates of the DAC, now allows for members of the dystonia research community to apply for funds in support of their work. 

The Congressional Directed Medical Research Program (CDMRP) is funded through the Department of Defense via annual Congressional legislation known as the Department Appropriations Act (the support is in response to requests by consumer advocates and disease survivors).  CDMRP will issue a program announcement for 2010 funding opportunities, including dystonia.

The DMRF joins with the other DAC member organizations, the Benign Essential Blepharospasm Research Foundation, DySTonia, Inc., the National Spasmodic Dysphonia Association, and the National Spasmodic Torticollis Association, to advocate for all persons affected by dystonia and supports a legislative and policy agenda that meets the needs of the dystonia community. 

Organizational members of the DAC will now work to promote this program to the dystonia research community to help advance dystonia research.

**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!

Juice Newton

THANKS TO ALL WHO ATTENDED THE DYSTONIA BENEFIT CONCERT FEATURING JUICE NEWTON & CAROL CURTIS

It was a great evening of fun, wonderful & energetic performances and inspiration...and all for a fantastic cause!! WE HAVE RAISED $11,000 SO FAR FOR DYSTONIA RESEARCH!!!! And donations for RESEARCH are still being accepted. Please click here to contact Martha for more information. JUICE & CAROL were both fabulous and each provided us with generous monetary contributions for research too!! And don't forget to visit Juice's websites at www.juicenewton.com and www.juicenewtonfanclub.com and Carol's website at www.pianowench.com Their CD's would make excellent GIFTS!! Also, Dave Mason from 105.7 FM The Walrus was great at helping to emcee, and they play some lively tunes on his station. You can hear streaming audio and read more about Dave Mason (Mason in the Morning) at http://www.1057thewalrus.com/pages/main

 

DYSPORT (another formulation of botulinum toxin Type A) was FDA-approved for the treatment of Cervical Dystonia and a cosmetic use on 4/30/09 and is now available in the U.S.! For more information, visit www.dysport.com

We record many of our support group meetings and make DVD's available to anyone interested for $15 (which covers our costs). Here is a partial list and please click here to place your order.

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.

Mind/Body Healing Techniques - Brian Alman, Ph.D. For more information on Dr. Alman and the various programs he offers, you can visit his websites at www.selfhypnosis.com or www.trusage.com

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