October 2010 Support Group Meeting

Saturday October 9, 2010 at CJW Hospital

Time: 12:00 to 3:00 PM

(Snacks only, will be provided)

For our October meeting, RJ will be lead a discussion on dystonia

Looking forward to seeing everyone at our next meeting on October 9th.

NSDA 2010 Challenge....We Need Your Support!

Twenty-one years ago, the NSDA Founders could probably only dream their organization had $63,000 or even $6,300 to help them spread the word about a little known and rare neurological voice disorder, Spasmodic Dysphonia, as they operated the NSDA out of their garages, on their kitchen tables and in their spare time from their day jobs. While the operating budget of the NSDA was probably closer to $63, these tireless volunteers answered phone calls from anxious patients, mailed information to anyone who asked (with money for postage out of their own pockets!), and began to set up a network of patients and physicians. In short, they set in place the building blocks of an amazing organization, and we have come a long way.

The NSDA has been building its research program and has funded two significant research grants in the last two years. We have tirelessly advocated for increased research into our condition and are committed to continually expand this program. In honor of our 21st anniversary, the NSDA Board has pledged to match the first $63,000 in donations to the NSDA! Let's all come together and honor our humble beginnings and continue to grow and build the NSDA.

Twenty one years from now, let us hope that when we tell our bosses, grandchildren or neighbors that we have Spasmodic Dysphonia, it will seem as familiar to them as diabetes or high blood pressure.

Better yet, 21 years from now, let us hope that the young and eager scientists that our organization funds have untangled the web that leads one to develop Spasmodic Dysphonia, developed even more effective treatments and/or cured this disorder. We can then tell stories about what it was like to live with Spasmodic Dysphonia. 

We have a strong foundation and can achieve these goals with your help. These funds will allow us to grow our critical research program, spread awareness, make Spasmodic Dysphonia a household name and support the tens of thousands of patients living with SD today.

Donate today! And donate generously! Give what you can (and maybe a little more)! Ask your friends, family and co-workers to do the same. Also, check and see if your company will match your gift. 



New Advocacy Website Launched

The Dystonia Advocacy Network launched a new website to make advocating for spasmodic dysphonia easier!

The new site includes:
o Legislative Agenda
o Advocacy Events
o Information about the DAN
o Progress and Impact of the DAN

Also, the new system has been implemented to make sending action alerts and effective.

Log onto today to see the new site: www.dystonia-advocacy.org

The Dystonia Advocacy Network (DAN) is a grassroots organization that brings dystonia-affected individuals together to speak out with a single, powerful voice on legislative and public policy issues which impact the dystonia community.

The DAN welcomes and represents individuals with all forms of dystonia, and is led by the following dystonia organizations:

·         Benign Essential Blepharospasm Research Foundation (BEBRF)

·         ST/Dystonia, Inc.

·         Dystonia Medical Research Foundation (DMRF)

·         National Spasmodic Dysphonia Association (NSDA)

·         National Spasmodic Torticollis Association (NSTA)

Dystonia advocates develop relationships with their legislative leaders to help them understand the challenges of those living with dystonia. The DAN continuously works to adopt and advance a legislative agenda which raises awareness of dystonia, educates policymakers about dystonia, addresses patient care issues, and moves research forward.

Your voice is needed to help find the cure for dystonia.
Become involved today!

CORE GROUP MEMBERS

Coordinator: Carol Wines

                        Phone: (804) 746-2321

                        e-Mail: carolw2006@comcast.net

Co-coordinator: Joyce Gumm

                        Phone: (804) 639-6778

                        e-Mail: JamesWGumm@aol.com

Treasurer:      Jim Gumm

                        Phone: (804) 639-6778

                        e-Mail: JamesWGumm@aol.com

Newsletter:     Ted Pytlik     

                        Phone: (804) 379-7230

                        e-Mail: ted.a.pytlik@usa.dupont.com

Dystonia Coordinator: RJ Bernard

                        Phone: (757) 724-5266

                        e-Mail: RJ.BernardIII@penske.com