News Archive

View the SD Reseach Update Webinar

The webinar that aired on November 7, 2012, is now uploaded to the NSDA video gallery and the NSDA YouTube Channel. It has been split into three sections for easier viewing. Special thanks to our presenter, Dr. Christy Ludlow, NSDA Scientific Director. More...

We had over 125 attend this first webinar and we are excited to connect with the SD community in new ways. We hope you find this information useful and informative. Thank you for your continued support of the NSDA!

Brain Donation for Spasmodic Dysphonia

The National Spasmodic Dysphonia Association, working with other organizations of the Dystonia Brain Collective, is proud to partner with the Harvard Brain Tissue Resource Center to help solve the mystery of spasmodic dysphonia and other dystonias through brain donation. More...

The Harvard Brain Tissue Resource Center is responsible for collecting, preserving, and distributing human tissue to qualified scientific investigators who are conducting important spasmodic dysphonia research. Scientific Director 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 a very large amount that can be used by many different researchers at institutions throughout the U.S. and worldwide. When you enroll as a potential brain donor, you are giving a very precious gift which will benefit many future generations.

The NSDA appreciates the response from the community. Based on questions received, below is an outline of the process involved. When the brain donor passes, the Next-of-Kin or Legal Representative contacts the Harvard Brain and Tissue Bank. Once the staff at Harvard receives the notification phone call, they will ask specific questions about the donor and then the staff person will make contact with a pathologist in the donor's local area (hospital, funeral home, etc, depending on where the donor is). Harvard staff will make arrangements for the recovery to take place. All of this needs to be done soon as possible. The NOK or legal representative needs to authorize the brain recovery to take place and this can be done via phone or fax. Since the recovery is done as close in time as possible to the donor’s passing, it does not impact funeral or memorial services. In addition, the entire brain is removed but it is done discreetly so as not to affect the outward appearance of the donor, allowing for a viewing during the memorial service. The brain needs to arrive at Harvard within the 24 hour period after passing.

The NSDA assumes any and all costs, so there is no expense to the family. The family will be asked to complete a questionnaire about the donor and will also be asked to grant permission for the donor’s medical records to be sent to the Brain Bank. The medical history and questionnaire are both important so the Brain Bank can reliably give researchers the correct tissue samples needed for their specific studies. When this information is received and after the tissue has been analyzed by the neuropathologist, the family will receive a copy of the final neuropathology report.

Snowdon Climb a Huge Success

Snowdon Climb a Huge Success

By Anne McDougall: On 24th June 2012, thirty one eager but mostly inexperienced individuals, set out to climb Mt Snowdon in North Wales, UK in aid of the National Spasmodic Dysphonia Association. The group comprised family, friends and colleagues, and consisted of all age groups, including a little girl aged seven and a dog called Ruby. The climb of Snowdon (the highest mountain in England and Wales, elevation 3560 feet or 1085 m) was organised by Anne McDougall, an SD patient, with her husband John taking up the challenge on her behalf. More...

We all met in the car park at the bottom of the mountain and after a few group photographs the ascent commenced in cloudy damp conditions. The weather in the UK had been atrocious for weeks  but no one expected the conditions on the mountain to be quite so challenging.  Very soon on the way up the conditions began to deteriorate; the cloud came down, the rain started and the mist rolled in. 

These intrepid supporters all pushed bravely on as I passed, waving at them from the relative comfort of the rickety, cramped, damp old train. On my arrival at the top there was thick fog, driving rain and it was blowing a gale. I imagined that many of the group would have turned back but with true grit everyone eventually arrived at the cafe at the top. All in good spirits, cold and wet, but laughing about their experience and their individual struggles to reach the top. John made sure everyone had arrived safely, gallantly going back to find and help a few stragglers.

Once everyone was refreshed with a hot drink, many were eager to start their descent, as the return can be more challenging that the upward climb. I began my journey down by train feeling inspired by all of them, and also feeling somewhat guilty that they had all put themselves through this for me.

At the bottom the weather had improved dramatically; the sun was out and it was warm. Later during the afternoon individual small groups began to arrive at the bottom and gather in the square for a drink, tired but elated by their success and willing to swap their experiences with fellow trekkers. One topic of conversation was “What shall we do next?”

I am inspired by them all and I thank every single one of them for their time, energy and contribution in making this a very successful fund raising event. Our aim was to have raised a few thousand  dollars for NSDA – to help finance their mission of awareness, research and support  for people with SD.

Photos of the climb are posted in the Photo Gallery section: http://www.dysphonia.org/photogallery.php

2012 Western Regional Symposium Update

The NSDA Western Regional Symposium was well-attended with people from around the United States along with attendees from Canada, Mexico, and New Zealand. More...

We had some of the leading experts in the spasmodic dysphonia and dystonia community speaking including:

Dr. Gerald Berke, Chairman of UCLA Head and Neck Surgery

Dr. Laurie Ozelius, Associate Professor in Genetics and Genomic Sciences and Assoc. Professor in Neurology at Mt. Sinai School of Medicine in NY

Dr. Christy Ludlow, Professor of Communication Services and Disorders and Director of the Laboratory of Neural Bases of Communication and Swallowing at James Madison University in VA

Presenting on the latest updates in treatments, genetics, and research, these three doctors also participated in a spirited questions and answer session.

After lunch, Dr. Tom Hofmann, Chair of the Psychology Dept. at Hodges University in Florida, talked about the Quality of Life with SD.

A full summary of the meeting will be available shortly. We thank all that attended the meeting to make is a success.

Join the New Global Dystonia Registry

Join the New Global Dystonia Registry

The National Spasmodic Dysphonia Association is proud to be part of a two-year effort to develop and implement the first-ever patient registry devoted to focal dystonias. The Registry is designed to collect data on persons affected by a focal dystonia(s), including spasmodic dysphonia, to assist in future research efforts and clinical trials. More...

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/

Dystonia to be including in 2012 DOD Program

Dystonia to be including in 2012 DOD Program

The NSDA is pleased to announce that dystonia will be included in the Department of Defense Peer Review Medical Research Program for 2012! This exciting news is the result of the hard work and many efforts of the Dystonia Advocacy Network advocates. More...

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.

Dystonia Advocacy Network Fiscal Year 2012 Appropriations Action Alert

On July 26, the House Labor-HHS-Education Appropriations Subcommittee is scheduled to mark-up its FY12 spending bill. This is the annual bill that funds all agencies within the Department of Health and Human Services (National Institutes of Health, Centers for Disease Control and Prevention, Health Resources and Services Administration, etc).  With the current budget allocation provided for this measure, the subcommittee is expected to produce a bill that spends significantly less on programs under its jurisdiction than last year.  Therefore, it is important for you to contact your representative this week and encourage him/her to support the Dystonia Advocacy Network. More...

World Voice Day - April 16

World Voice Day LogoThe theme for World Voice Day 2011, "We Share A Voice," reminds people of the value and significance of vocal health in everyday life. More...

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.

 

Merz Announces New Centers for Medicare and Medicaid Billing Q-code for Xeomin

The Center for Medicare and Medicaid Services (CMS) has granted a unique billing code for the recently approved botulinum toxin, Xeomin® .  This took effect on April 1st and will make it easier for physicians to bill and be reimbursed for this FDA approved treatment for dystonia. It is important for doctors and patients to have access to all medications approved to treat dystonia. Special thanks to the dystonia advocates who met with CMS officials to help them understand the importance of issuing this temporary code, giving access to this treatment for the dystonia community.   More...

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.

 

Sprinting for SD: Steve Gorman Runs Marathon to Raise Funds for the NSDA

Sprinting for SD: Steve Gorman Runs Marathon to Raise Funds for the NSDA

In the early morning hours on May 1st, Speech-Language Pathologist Steve Gorman will set out for a grueling run of 26.2 miles through the streets of Cincinnati, OH. He is participating in the “Flying Pig” marathon and with every step, he is helping to raise funds for research to generously support the National Spasmodic Dysphonia Association. Steve has set a goal of $2,500 and a donor will be matching the funds for a total of $5,000. We hope you will help and support Steve in this endeavor. Donate now! More...

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 2nd 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!