National Spasmodic Dysphonia Association

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.

Every year on April 16, voice professionals worldwide join together to recognize World Voice Day. World Voice Day encourages men and women, young and old, to assess their vocal health and take action to improve or maintain good voice habits. The American Academy of Otolaryngology-Head and Neck Surgery has sponsored the U.S. observance of World Voice Day since its inception in 2002.

New Q-code Will Help Simplify Billing and Reimbursement

March 30, 2011 - Merz Pharmaceuticals, LLC announced today that the Centers for Medicare and Medicaid Services (CMS) has granted a unique billing code, Q2040, for Xeomin (incobotulinumtoxinA). Merz expects that this unique billing code, which becomes effective on April 1, 2011, will help simplify the billing and reimbursement process for prescribers of XEOMIN.

The US Food and Drug Administration (FDA) approved Xeomin in July 2010 for the treatment of adults with cervical dystonia, to decrease the severity of abnormal head position and neck pain in both botulinum toxin-naive and previously treated patients, and blepharospasm in adults who have been previously treated with Botox (onabotulinumtoxinA).

As permanent national codes are issued annually, CMS awards Q-codes when it identifies a need to provide a unique code in order to reduce billing confusion before the next national update on January 1 of the following year. Merz has applied for and anticipates receiving a permanent J-code for Xeomin on January 2, 2012.

For providers and payors, utilizing a unique Q-code is in most circumstances administratively identical to billing under a permanent J-code.  The availability of this unique code, Q2040, means that in most instances Xeomin will no longer be billed under a miscellaneous code. 
Merz also recently introduced two comprehensive programs to provide patients with financial assistance for Xeomin. The Xeomin Patient Co-payment Program is easy-to-use and offers eligible patients assistance for their actual out-of-pocket costs for therapeutic treatment with Xeomin. Eligible treatment-related costs may include the cost of Xeomin, associated guidance therapy and related administration fees.

Additionally, the Xeomin Patient Assistance Program provides Xeomin at no cost to eligible patients who are experiencing financial hardship, do not have third-party drug coverage, and who are not eligible for government-funded drug programs.

For more information about reimbursement support and financial assistance programs for Xeomin, visit www.Xeomin.com or call 888-4-XEOMIN (888-493-6646). Dedicated support representatives are available from 8 am until 8 pm (EST), Monday through Friday.

About Xeomin
Xeomin is a therapeutic botulinum toxin product. Xeomin (incobotulinumtoxinA) is manufactured using a proprietary process that isolates the therapeutic component and eliminates accessory proteins. More than 84,000 patients have been treated with Xeomin worldwide since 2005.  The US is the 20th country to approve Xeomin for the treatment of cervical dystonia and blepharospasm.

Xeomin is the only botulinum toxin that does not require refrigeration prior to reconstitution. Xeomin is available in 50-unit and 100-unit vials, which Merz believes may allow for more precise billing and reduce wastage. 

About Merz
Merz Pharmaceuticals, LLC is a part of the Merz Group of companies and was established in 1995 to develop and commercialize products for the Merz Group. Areas of therapeutic focus include Neurology, Dermatology, and Podiatry.

Professionally, Steve is a voice pathologist at the Blaine Block Institute for Voice Analysis and Rehabilitation, a division of Dayton Head and Neck Surgeons, Inc. He received his Bachelor of Science from Bowling Green State University, his Master of Science from University of Wisconsin-Madison, and his Ph.D. from University of Cincinnati. He is active in the Greater Dayton Spasmodic Dysphonia Support Group and was a speaker at the 2010 NSDA Eastern Regional Symposium.

From the Steve:
I guess I can say I have been running almost nonstop for 25 years now. I started by training for a 10-miler when I was a grad student at Wisconsin, the Volksfest Run in Waunakee, WI (the world’s only Waunakee!) That eventually led to trying the marathon: Los Angeles in 1987. I moved to Palm Springs in 1986 after finishing my degree at Wisconsin (really wanted to go someplace warm!) While there I entered San Diego twice (didn’t finish either one due to a knee problem), and Long Beach twice (finished both!) in addition to LA. Then I moved back to Ohio and did a few more: New York City, Pittsburgh, Disney-Orlando, and Memphis. I also ran two 50K (31 miles) ultra-marathons in this same time span.

About this time I started the doctoral program at University of Cincinnati, and my marathoning career went on hiatus. I continued to run for fitness and ran in local 5K and 10K races. After I finished doctoral studies in 2002, I started to think about another marathon, but I didn’t want to do it just for myself. Marathoning can be quite an “all about me” endeavor, and I had done enough of that. My niece ran a marathon a couple of years ago for Team in Training/Leukemia Society. I thought that would be the way to go. I considered doing this last year, but my body kept telling me “you aren’t ready.” I lost 10 lbs. over the summer on a backpacking trip with my two sons, Andy and Ben, and it’s amazing how that 10 lbs. equates into my joints feeling pretty good after a long run! My boys both run on the cross country team at Mariemont High School and their success this past 2 years (back to back league championships, state qualifiers!) further inspired me and my training. Now I feel ready for the physical challenge, as well as the challenge of raising money for the NSDA. Since the Dayton Support Group has been up and running (no pun intended) for over a year now, the indomitable will of the members of the group has given me the will to take on this challenge.

What else can I say about running? I met my wife through running! A physical therapist, with whom I worked in Palm Springs, and I were trying to put together a marathon relay team for the “Jimmy Stewart Relay Marathon” in Griffith Park in LA in 1988. We wanted to put together a co-ed team and needed one more female runner. An occupational therapist on the team knew that her daughter’s 2^nd grade teacher was a very good runner and thought she might do it. Well, to make a long story short, it was love at first work-out. Cindy, who married me two years later, was a college All-American in cross country and track and still holds the school and conference record in the 10,000 meters track race (that was in 1985 mind you!) Her fastest time in the marathon, of which she’s run about 30, is 2:52! That’s pretty darn fast for 26.2 miles. I got very used to looking at her back on training runs and races, since she was always ahead of me. I didn’t feel too bad about it because almost all of our running friends were getting the same view, including the men!

I was going to do this last year, but got injured during my training. Now, I’m healthy and looking forward to running on May 1 for the NSDA and the Greater Dayton Support Group!”

Support Steve today!

The U.S. Senators from Illinois, New York, and Virginia, have been asked by the Dystonia Advocacy Network (DAN) to formally request that dystonia remains part of the Department of Defense (DOD) Peer-Reviewed Medical Research Program. In order to ensure that these Senators follow through and make this important request, they must hear from their constituents (you). If you are from one of these states, please contact your Senators in this regard to ensure that this effort is successful and DOD-supported dystonia research can continue.

How You Can Help:
Correspondence has been prepared to the Senators from Illinois, Richard Durbin (D-IL) and Mark Kirk (R-IL), New York, Chuck Schumer (D-NY) and Kristen Gillibrand (D-NY), and Virginia, Mark Warner (D-VA) and Jim Webb (D-VA). This correspondence asks these Senators to send a formal request to the Chairman and Ranking Member of the Senate Defense Appropriations Subcommittee, Senators Daniel Inouye (D-HI) and Thad Cochran (R-MS), that DOD-supported dystonia research activities continue in fiscal year (FY) 2012. If you are from Illinois, New York, or Virginia, please send a message to your Senators via the Dystonia Advocacy Network e-mail system or use the draft message to craft your own e-mail, fax, or phone call to your Senator's DC office.

Take Action Now:
Go to www.dystonia-advocacy.org/actionalerts/ and click on "Take Action" on the left side of your screen. Enter your zip code when prompted and send the message to your Senators.

OR

Use the following message as talking points to call your Senators' DC offices, as an outline for a more personalized e-mail appeal to your Senators, or as an outline for a more personalized appeal that you can fax to your Senators' DC offices; please do not send letter via standard mail. To identify the contact information for your Senators go to www.dystonia-advocacy.org/actionalerts/ and enter your zip code in the middle of the screen.

Background:
Each year, the Senate Defense Appropriations Subcommittee drafts an annual Defense Appropriations Bill. This legislation funds the DOD Peer-Reviewed Medical Research Program and includes a list of conditions that are deemed "eligible for study". Only conditions that are on the annual eligible conditions list can receive research funding that year. Dystonia has been included on this list due to the medically-documented link between suffering a traumatic injury, such as through combat operations, and developing dystonia. However, being on the list one year is no guarantee that a condition will be included on the eligible conditions lists again in subsequent years. In order for a condition to be included on the eligible conditions list in a given year, a Senator or Senators must make a formal request to the Defense Appropriations Subcommittee that the particular condition be included.

The DAN has met with the Senators from Illinois, New York, and Virginia and asked them to join together to make request that the Senate Defense Appropriations Subcommittee include dystonia on the eligible conditions list within the FY 2012 Defense Appropriations Bill. These Senators must now hear from their constituents that making this request is important in order to see that they follow through. The Defense Appropriations Subcommittee is currently crafting the FY 2012 Defense Appropriations Bill, so they must receive the request that dystonia be included on the eligible conditions list from their Senate colleagues from Illinois, New York, and Virginia ASAP.

The goal is to raise awareness on Capitol Hill about spasmodic dysphonia and the issues that affect our members including increasing NIH research, access to care, and Medicare reimbursement.

Tuesday, May 10th will feature an afternoon of Advocacy Training and Legislative Review followed by dinner at the Embassy Suites DC Convention Center in Washington, D.C. On Wednesday, May 11th all advocates will spend the day on Capitol Hill. We will conclude on Wednesday by 5:00 pm. In addition to sharing your personal story, you will urge Members of Congress to take action on important initiatives, like funding federal dystonia research activities. The DAN Position Paper, Talking Points and Backgrounder will be sent to you in advance of your trip.

If you are interested in participating, please click here to register. Travel scholarships are available especially for those members in priority states.

The goal of this research is to study the use of a tool called 'high-speed digital imaging' to identify key components of vocal fold motion disturbance responsible for vocal spasms and strained, strangled voice quality in patients with adductor spasmodic dysphonia. The battery of tests that are currently used to clinically test vocal fold vibrations, results in invalid assessments in participants with severe dysphonia, like that of spasmodic dysphonia, due to inherent limitation of the instruments. High speed digital imaging however can capture up to 8000 frames per second; hence can be used to evaluate the small and rapid changes of vocal fold vibrations. Simultaneous laryngeal electromyographic recordings will be performed with high speed digital imaging to investigate the muscle activity responsible for the unique vibratory features observed in participants with spasmodic dysphonia.

Results from this study will assist in clinical decision making regarding treatment with unilateral versus bilateral botulinum toxin injections. The findings of this study will also help investigate the much needed short-term and long-term outcomes of voice quality and vocal fold motion, following botulinum toxin treatment in patients with spasmodic dysphonia.

Charlie Reavis, NSDA's President stated: "Through the hard work of dedicated volunteers along with generous donations from our members and the SD community, we have been able to grow our research program. This grant in particular represents NSDA's commitment to funding young investigators as it is a training grant with NSDA Scientific Director Dr. Christy Ludlow. Ensuring the 'next generation' of researchers will be interested in spasmodic dysphonia is crucial for gaining a greater understanding of our disorder."

Dr. Patel (pictured) obtained her doctoral degree and clinical training from the University of Wisconsin Madison. She has 14 years of clinical experience with management of voice disorders and eight years of research and clinical experiences with high speed digital imaging. Her research focuses on understanding vocal physiology with the use of high speed digital imaging across life span. She is the recipient of the ASHA Foundation's New Investigator Research Award and Clinical Practice Research Institute Award for her research on high speed digital imaging of the vocal folds. Dr. Patel served as a topic coordinator for the Voice, Resonance, and Laryngeal section, at the 2008 annual American Speech-Language-Hearing-Association Conference.

In addition to research grants, the NSDA continues to support Project 3 of the Dystonia Coalition's work with Dr. Christy Ludlow on the Validation of a Diagnostic Tool for Spasmodic Dysphonia.

This is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year. Learn more.

Your ongoing support helps us to reach out to new and existing people with SD, implement new programs, spread awareness and fund crucial research aimed at identifying the underlying cause, better treatment, and, ultimately, a cure for this disorder.