National Spasmodic Dysphonia Association

We hope you will join us for a special live webcast of the benefit concert featuring Juice Newton (pictured below) & her band the Regener8tors, Billy McLaughlin & D.C. Hathaway. All fabulous!!! The concert begins at 7 p.m. PST at Sycuan Theatre.

Paul Fowler, Master of Ceremonies, has spasmodic dysphonia and is the President of the Juice Newton Fan Club. Billy McLaughlin is an amazing solo acoustic guitarist who retrained himself to play guitar with his opposite hand after developing dystonia. Also featuring D.C. Hathaway the song painter. D.C. was a singer until his spasmodic dysphonia took his voice.

If you are enjoying this special webcast, please consider making a donation to the NSDA to help support spasmodic dysphonia research

Schedule
Friday, April 27
7:30 p.m. - Welcome Reception

Saturday, April 28
10:00 a.m. - Registration Opens
10:30 a.m. to 3:00 p.m. - Symposium
6:30 p.m. - Optional Dinner

Register On-Line Now!

Medical Speakers include:
Christy Ludlow, Ph.D.
Gerald Berke, M.D.
Laurie Ozelius, Ph.D.

Hotel and Meeting Location
The meeting will be held at the Holiday Inn & Suites Phoenix Airport. We have a secured special room rate of $109 plus tax per night.

The hotel is located at:
Holiday Inn & Suites Phoenix Airport
3220 S. 48th Street
Phoenix, AZ 85040
Phone: 480-543-1700
Book your hotel room by clicking here

Transportation The closest airport to the Holiday Inn & Suites Phoenix Airport is the Sky Harbor International Airport (PHX) and there is complimentary shuttle service from the airport to the hotel. Parking is free at the hotel.

Registration
Registration - $20
Saturday Evening Dinner - $30

Speak Out for Spasmodic Dysphonia - Add Your Voice!
Would you like to contribute to the growing library of voice samples on the NSDA website? We will be taking recordings at the symposium so that they can be added for others to hear the variety of spasmodic dysphonia.

Register On-Line

The concert begins at 7 p.m. (doors open at 6 p.m.) at Sycuan Theatre, 5469 Casino Way, El Cajon, CA 92019. Tickets are $35 and $45 and can be purchased online at www.sycuan.com/entertainment or in-person at Sycuan's Box Office. For disabled seating, contact Erin Miller at 619-445-6002 x-1171. Must be 21 or older w/valid I.D. to enter the theatre. Free parking and free valet parking.

Paul Fowler, Master of Ceremonies, has spasmodic dysphonia and is the President of the Juice Newton Fan Club. Billy McLaughlin is an amazing solo acoustic guitarist who retrained himself to play guitar with his opposite hand after developing dystonia. Also featuring D.C. Hathaway the song painter. D.C. was a singer until his spasmodic dysphonia took his voice.

Six restaurants on-site so come early and enjoy a nice, leisurely dinner! And for those of you who live a distance away or who don't want to drive home after the concert, remember that Sycuan has a resort with lodging and that could help to solve your problem!! Also remember, this is President's Day Weekend so many of you will have a 3-day weekend!

If you are not able to attend but would like to make a tax-deductible charitable to support the event, donations can be made payable to DYSTONIA OF SAN DIEGO with a notation of "Benefit Concert" and mailed to: Martha Murphy, 5134 Leo St., San Diego, CA 92115-1535

Also, if you would like to listen to an interview about the concert and dystonia with Juice Newton, Paul Fowler, D.C. Hathaway & Martha Murthph with Drew Schlosberg at the U-T for his Community Spotlight.

Part 1 and Part 2

Beneficiaries of this event are the National Spasmodic Dysphonia Association and the Dystonia Medical Research Foundation.

See the video promo for the concert!

Thank you for your continued support!

This collaboration is between dystonia patient organizations, including the NSDA, and the research leaders of the Dystonia Coalition to develop and offer this self-reporting patient registry to the dystonia community. "The registry is a fantastic new opportunity for the dystonia community worldwide. It will be extremely valuable for fostering better communication between people who are affected by dystonia and researchers who are trying to learn more about dystonia," said Dr. H. Jinnah, the principal investigator for the Dystonia Coalition.

Although the focal dystonias, including spasmodic dysphonia, have many different manifestations, most experts believe they share a common pathogenesis or mechanism that causes the disorder. The common causes may be a similar gene defect, similar lifetime experiences, or both. Collecting information from different patient populations may help us identify the common features that they may share. This Registry complements the current scope of research for the Dystonia Coalition, a National Institutes of Health supported clinical research effort.

We anticipate that it will take 10 to 15 minutes to complete the survey. However, you may log out at any time and your answers will be saved. Please know your responses will remain confidential. Your participation is completely voluntary. We hope you will register today!

http://www.globaldystoniaregistry.org/

We are pleased to join with the Benign Essential Blepharospasm Foundation, DySTonia, Inc., the Dystonia Medical Research Foundation, and the National Torticollis Association as a member of the DAN – working every day to ensure that the legislative needs of the dystonia community are met and in this case, that dystonia researchers have the opportunity to compete for critical federal research support.

Can we imagine a day when we have our true and natural voice back? Really, if you take a moment to stop and think, can you imagine the blessing it would be? I can. Do we ever watch television, listen to a song, or have a conversation with someone and get so lost in the beauty of their voices or, simply, the ease with which they speak that we find ourselves almost in awe of their voice, barely aware of what they are saying?

Today may not be your birthday but the gift of regaining one's voice would be one no SD patient would ever forget. To help make this "birthday gift" even better, the NSDA Board has pledged to match the first $60,000 in donations to the NSDA! We are currently at $36,000 - over half way there!

Let's continue the research we have started; the research aimed at better understanding what is going on in the brain of those with SD, and finding better treatments for this disorder. Let us have the funds necessary for new proposals from scientists interested in conducting SD research and collaborating in the dystonia community. All of these steps are necessary to continue our understanding of the disorder, an understanding that will be critical to guide future research, to develop better treatments, and to find a cure(s).

If you are a person with SD, who better to be generous with than yourself? If you are a family member, a friend, a colleague, a donor, a doctor, a professional or anyone else interested in our wonderful community, please help us give SD folks one of the best gifts they could ever ask for.

Donate today! And also check and see if your company will match your gift to make your gift go even further.

Help us support the NDSA vision to ensure the ongoing viability of the organization that will continue to lead the effort to eradicate spasmodic dysphonia. This is a gift to all of us.

Finding the causes of a complex neurological disorder such as spasmodic dysphonia is an enormous task and one that a number of researchers and clinicians have dedicated their lives to pursuing. To understand the etiology of spasmodic dysphonia, we must rely, to a large extent, on the analysis of donated brains. Through the study of these brains, important clues about spasmodic dysphonia can be discovered. When scientists examine samples from donated brains and compare different age groups, genders and so forth, they can begin to gain a better understanding and knowledge of this complicated disorder, which will lead to development of novel therapeutics and treatments. This, in turn, will offer hope for SD-affected individuals and their families.

How will the tissue be used?
Our Scientific Advisory Board Chairperson, Dr. Christy Ludlow, represents the NSDA on the research committee which reviews applications from researchers requesting brain tissue. Since the majority of the scientific research studies can be carried out on a very small amount of tissue, each donated brain provides tissue that can be used by many different researchers at institutions throughout the U.S. and worldwide. When you enroll as a brain donor, you are giving a very precious gift which will benefit future generations.

How Do I Get Involved?
To enroll in the Dystonia Brain Donation Collective, click here to open up the registration form. Please print it out and either mail or fax it back to the NSDA.

We know that these decisions are not easily made and talking to your family is critical. But we also are confident that further advances can be made in understanding spasmodic dysphonia through this type of research. So we thank you for your consideration of this most generous gift.

Dear Potential Reader,

Twenty-two years ago I was diagnosed with spasmodic dysphonia (SD) and ever since have had a soft voice, with breaks and a tremor, which make it difficult to verbally communicate with people.

Those of us with SD have SD; we aren't SD. We find outlets for our skills and creativity that extend in directions where verbal interaction isn't a top priority, but we need to have better voices to lead normal lives. I'm a nationally published poet, my first book, MARCH, BEFORE SPRING, is now in its third printing.

Wanting to combine my writing with finding a cure for spasmodic dysphonia, I am donating all profits from my second book, BARE BRANCHES, to the National Spasmodic Dysphonia Association to find better treatments and a cure for this neurological voice disorder. BARE BRANCHES contains two poems about living with spasmodic dysphonia.

If you decide to purchase a book, you have my appreciation for helping the NSDA move forward its effort to fund SD specific research, provide support for SD patients and their families and increase awareness of spasmodic dysphonia. Order your copy today!

With warm thanks,
Stephie Mendel
NSDA Board Member
San Francisco / North Bay SD Support Group Leader