25 years of support - National Spasmodic Dysphonia Association

National Spasmodic Dysphonia Association
25 years of support
What is Spasmodic Dysphonia?
Spasmodic dysphonia (SD), a focal form of dystonia, is a
neurological voice disorder that involves involuntary “spasms”
of the muscles in the vocal cords. It causes interruptions of
speech and affecting the voice quality. SD causes the voice
to break up while the persons is speaking and sometimes the
voice will also have a tight, strained, or strangled quality.
Our Vision
The vision of the National Spasmodic Dysphonia Association
is to ensure the ongoing viability of the organization that will
continue to lead the effort to eradicate spasmodic dysphonia.
Our Mission
The mission of the National Spasmodic Dysphonia Association
is to advance medical research into the causes of and treatments
for spasmodic dysphonia, promote physician and public
awareness of the disorder, and provide support to those
affected by spasmodic dysphonia.
FROM THE PRESIDENT
The National Spasmodic Dysphonia Association (NSDA) was established as a result of the
desire to help people cope with the debilitating voice condition, spasmodic dysphonia. It
was brought to reality with the help, dedication and compassion of our Founding President,
Larry Kolasa and Daniel Truong, M.D. From humble beginnings, the foresight, patience and
can-do attitude of this small group of volunteers has grown into a strong organization that
provides a voice for those living with spasmodic dysphonia.
The road taken by this small organization has been built on strong and solid ethics, principles
and core values as demonstrated by our Founders 25 years ago. Congratulations and special
thanks to everyone who contributed to the efforts that allowed the NSDA to achieve this
major milestone!
The NSDA is a unique and incredible donor-supported nonprofit organization with the
most committed staff and volunteers that I have ever had the privilege of working with.
One thing I have learned and admire about people with SD is their perseverance, dedication
and a wonderful stubbornness that anything is possible. Let’s continue those efforts to ensure
that the next 25 years will bring much greater understanding of spasmodic dysphonia through
expanded research with improved and more effective treatment options. I am convinced
that working together with one, loud and clear voice, our Vision for the NSDA — “Ensure
the ongoing viability of the organization that will continue to lead the effort to eradicate
Spasmodic Dysphonia” — can and will become a reality.
Charles Reavis
President
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Charlie Reavis, President
NSDA HISTORY
The First 25 Years
1989-2014
Founding Medical Advisor Daniel Truong,
M.D. and Founder Larry Kolasa
NSDA was founded in
“The
1989. In that same year, I was
diagnosed with SD. Also, in
1989, The SD Support Group of
Charlotte, NC was founded, and
I became a member. For me,
this 25th anniversary is so special. It is a silver anniversary and
the components of that word
“silver” spell out the essence
of the NSDA. SILVER: Support
Information Loyalty Volunteers
Education Research. The NSDA
offered me help and hope when
I was first diagnosed with spasmodic dysphonia. The NSDA
continues to be there for me
and for my fellow SD warriors.
It has been a joy and a privilege
to “pay forward” what I have
received from the NSDA. Being
in the position to help others
with SD in my role as an NSDA
Leader has brought countless
blessings to my life. I continue
to meet wonderful people who
teach me important life lessons.
I have hope because I am aware
of all the people working so
hard in pursuit of the NSDA
mission. Our cause is worthy
of our efforts.
”
Mary Bifaro
Support Services Director and
Spasmodic Dysphonia Support
Group of Charlotte, NC Leader
Twenty five years ago, the National Spasmodic Dysphonia Association was created through
the passionate commitment of a small group of patient advocates and medical professionals,
all of whom dedicated themselves to providing the spasmodic dysphonia community with
a national organization. In the late 1980s, Larry Kolasa was living in Birmingham, MI, and
was struggling with his voice and searching for answers. He became actively involved with a
group of people in the area experiencing the same challenges.
Through that support group, Larry was introduced to Daniel Truong, M.D., a neurologist in
Detroit, MI, who was treating people with a rare voice disorder called spasmodic dysphonia
(SD) by injecting botulinum neurotoxin into the muscles in the larynx controlling the
vocal folds (cords). This procedure was pioneered and first performed by Dr. Andrew Blitzer
and Dr. Mitchell Brin in April 1984, in New York City. Dr Truong treated Larry and slowly
his voice began to return.
In the spring of 1989, Dr. Truong and Larry discussed the idea of forming a national organization for people living with spasmodic dysphonia. They talked about the structure and
resources required and decided to proceed with establishing it. Larry accepted the role of
President with the task of turning this idea into a viable and functioning organization.
Rick Johnson became the Treasurer, Paula Mahinska was the Secretary, and Dr. Truong
and Michael Rolnick, Ph.D., CCC-SLP served as the first medical advisors.
On August 3, 1989, all the documents for incorporation as The National Spasmodic
Dysphonia Association (NSDA), a 501(c)(3) nonprofit were signed and filed with the
State of Michigan. The Mission, which is still in place today, was to advance medical
research into the causes of and treatments for spasmodic dysphonia, promoting physician
and public awareness of the disorder and sponsoring support groups for people with SD
and their families.
A network of existing local spasmodic dysphonia support groups in Los Angeles, CA;
Detroit, MI; Bethesda, MD; Little Rock, AK; SE Michigan; Greensboro, NC; and New
York City served as the foundation of the Support Network for NSDA. With the support of
Dr. Truong, the first national meeting of the National Spasmodic Dysphonia Association
was held in Irvine, CA in conjunction with the National Torticollis Association on March
9-10, 1991. This conference attracted people with SD from various areas of the country and
established the NSDA as a national organization. By this time, as a result of the work of the
NSDA leadership, there were 28 support groups in the United States and three in Canada.
The initial NSDA Board of Directors consisted of nine volunteers from across the country.
The primary functions of the Board were to approve the annual budget, determine program
emphasis and develop strategies for implementation of the NSDA Mission. Two of the original nine NSDA Board members are still serving today — Larry Kolasa and Dot Sowerby.
The NSDA Medical Advisory Board (MAB) was established in the early 1990s to assist in
the promotion of the NSDA, its Mission and goals among medical and speech professionals. These objectives would be accomplished through writing and/or approval of medical
brochures, materials and articles for the newsletter. They would assist with medical conferences, publicize the availability of research grants and encourage researchers to apply for
grant programs.
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on this
“Congratulations
milestone anniversary! What a
The NSDA was volunteer-based and the first office was in Birmingham, MI. In June,
1997, the NSDA partnered with the Dystonia Medical Research Foundation (DMRF)
to provide the management for the organization in order to better educate the medical
community about SD and enable funding for SD-specific research. Led by then Executive
Director Valerie F. Levitan, Ph.D., great strides were made by the medical and research
communities in gaining a better understanding of SD, developing a stronger support
network, and raising awareness of spasmodic dysphonia
testament to the founders of
NSDA and those they inspired
to carry the flag. The vision,
commitment of resources, and
untiring efforts to unravel the
mystery of a strangled voice
that minimizes a robust persona, have built a powerful
global community, inspired
researchers to look for cause
and cure and have provided a
clear voice for those who have
lost or are losing theirs. Thank
you NSDA! We know we are
not alone.
This partnership lasted until the end of 2004 and allowed the organization to grow.
On January 1, 2005, the NSDA Board established its own management, with Kimberly
Kuman serving as the Executive Director. One of the first priorities was to find appropriate office space for the organization. The NSDA was contacted by Allan Hamilton,
Senior Member of Hamilton Partners, who offered his assistance with the new management. With the generous help of Allan and his sons, Mark and Kirk, the NSDA’s office
was established in their building at 300 Park Boulevard, Itasca, IL, where it continues to
house the day-to-day running of the NSDA.
”
Lois Jackson
Greater Washington DC Metro
SD Support Group Leader
Once the NSDA bedded in the new organization, the Board established an SD-specific
Research Grant Program in 2007. In order to appropriately publicize grants, review
applications and make funding decisions, the NSDA Scientific Advisory Board (SAB)
was formed with Dr. Christy Ludlow serving as the Chairperson. The SAB adopted the
rigorous review process used by the National Institutes of Health (NIH) to review grant
applications and make funding recommendations to the NSDA Board. Based on the SAB
recommendations, the NSDA has funded a number of SD-specific grants.
journey with spasmodic
“My
dysphonia has many aspects. It
has been a learning experience
for my family, friends, doctors
and me. I have been gifted
with meeting fantastic new SD
friends. Despite my training as
a Special Education teacher, I
have also learned to see my SD
from the angle of someone with
a disability. This allowed me to
have more compassion for my
students, while they accepted
me for who I was without any
judgment. This was priceless!
Thank you to those who work
tirelessly to find a cure. Without your efforts, those of us
with SD would be lost souls.
Thank you.
During the first 25 years, the NSDA has made tremendous gains in striving to achieve the
Mission of encouraging and funding SD-specific research, increasing awareness of SD and
providing support for people with SD and their families. This is evidenced in a number of
ways but none more important than people who have developed this voice disorder
achieving a correct diagnosis in months versus years; the growth and viability of the
Support Network from the original seven support groups to more than 80 and over 225
active Area Contact Persons (ACPs); and the increased interest shown by the research
community in SD-specific research with the funding of the first genetic research grant
in 2012.
The NSDA has come a long way from its humble beginnings where Larry Kolasa’s kitchen
table and the trunk of Rick Johnson’s car were used as the office. The history of the
NSDA could not be written without the generosity of its donors over the last 25 years
that have made a significant impact on the organization. We thank you and appreciate
your investment in the organization. We are grateful for the dedication and commitment
of the volunteers and staff in the work necessary to achieve the NSDA Mission. We are
confident with the continued involvement of the community and the dedicated medical
professionals supporting the SD cause, the NSDA Vision — Ensure the ongoing viability of
the organization that will continue to lead the effort to eradicate Spasmodic Dysphonia — can
and will be achieved. Happy 25th Anniversary to the NSDA!
”
Barb Meteyer
Traverse City, MI, Area
Contact Person
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AWARENESS AND OUTREACH HIGHLIGHTS
I had to choose the one
“Ifbenefit
I have received from the
NSDA that has most impacted
my life, I would have a hard
time choosing. Would it be the
real-life stories shared on the
pages of the NSDA Our Voice
newsletter, that have helped me
to see that there are others who
share this challenge, so that I
don’t feel so isolated? Or would
it be the encouragement I have
read from those stories of people who have been able to live
happy and fulfilled lives despite
their vocal challenges? Perhaps
I am most impacted by the medical and scientific explanations
of the disease, which give me
a realistic understanding of the
various treatments and potential
for success. These keep me from
pursuing questionable cures
that would probably only drain
my bank account. They also
help me to make choices that
potentially could improve vocal
quality and function. Or, though
I may not feel the impact as
directly, perhaps the research
and dissemination of information underwritten by the NSDA
has actually had the greatest
impact, because now doctors
are more aware of SD, and
more doctors are being trained
to treat the condition. I could
probably think of additional
ways that the work of the NSDA
had impacted my life. But just
thinking about these reminds
me that it is time to say thank
you for the hard work done by
all of those involved with the
National Spasmodic Dysphonia
Association.
”
Ray Schumacher
Milwaukee, WI
Midge Kovacs, living in New York City, started one of the first SD support groups in 1987
and published a newsletter titled Our Voice for the purpose of communicating current
information about SD and sharing the experiences of people living with SD. This was the
first “unofficial” newsletter of the organization. Midge was a Marketing Executive impacted
by SD in her personal life and professional career. After Midge passed away in 2004, the
NSDA contacted her family to request permission to name the NSDA Newsletter Our
Voice as a tribute to Midge’s pioneering work to increase awareness of spasmodic dysphonia.
In addition, an annual award was established in her honor to recognize the work of our
NSDA Support Groups.
In 1991, Adrienne Simons, also in New York City, was experiencing voice problems which
started her journey to discover the cause of her voice disorder which is now all too familiar
to many with spasmodic dysphonia. She eventually found an otolaryngologist who diagnosed her voice disorder as SD. After becoming a member of the New York City Support
Group, she was encouraged to write the story of her SD journey which was published in
the October 1990 issue of Prevention magazine. The article generated over 1,200 responses
to the NSDA asking for more information about SD and where to find physicians familiar
with this voice disorder, spasmodic dysphonia. Many people struggling with a voice problem
said that this was the first time they heard a name for the condition that described their
own voice.
To raise awareness among the medical professionals, in 1994, the NSDA began exhibiting
at speech, otolaryngology, and neurology conferences. Dot Sowerby has continued to lead
this charge and enlists the help of local volunteers, representing the NSDA at over 40
meetings.
In April 1996, David Barton in Auckland, NZ; Larry Craig in Montreal, Canada and Anne
Brett in San Antonio, TX conducted a meeting via inter-relay chat to discuss establishing
the Dystonia On-Line Support Group. By October that year, there were 54 people with SD
included. This on-line support was expanded in 1997 with the establishment of AOL SD
chat group, started by Doris White and Jelaine Wood.
In order to provide a more interactive and accessible on-line forum for people with SD to
communicate with each other, the NSDA developed and implemented its own Bulletin
Board (BB) in June 1997 with the help of Robert Campbell who continues to provide the
technical administration of the site. The BB quickly became the preferred communication
mode for people with SD since it allowed them to share experiences about their personal
journey with SD without the frustration of using the phone. David Barton and Lloyd
Pearson were the founding Moderators of the NSDA BB, and David still serves in that
position today along with Will Blum. Recently, the posts to the BB exceeded 41,000 since
its inception which attests to the vital role this forum has in the support and services the
NSDA provides the SD community. Today we have over 5,000 people that are part of our
NSDA on-line community.
In 1997, with a grant from the Million Dollar Roundtable Foundation, the NSDA created
the video, “What is Spasmodic Dysphonia?” starring NSDA Honorary Board Member, Chip
Hanuaer. The NSDA was able to reach more people with SD and physicians through this
diagnostic video that went on to win first place in the American Medical Association’s
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Crystal Medallion Award for Best Professional Health Campaign. Also, Chip, a Motorsports
Hall of Fame speedboat racer, elevated awareness of SD with the public and medical
community by using every interview opportunity to talk about his personal journey with
spasmodic dysphonia. Chip also spoke at the 2008 NSDA Symposium in Salt Lake City.
This awareness project also marked the start of a successful relationship with Marty Riemer
who has been instrumental in working with the NSDA on its media needs including video
and website with understanding and compassion to produce effective tools.
The NSDA web presence started in 1997 with a dedicated page at the DMRF website that
featured information about SD, contact details, and a list of available resources to help
people with SD. In 2001, the NSDA established its unique website (www.dysphonia.org)
with a grant from Allergan Corporation. The site contained information about SD, treatment options, support details, and a Healthcare Referral Listing of physicians and Speech
Language Pathologists (SLPs) who treat people with spasmodic dysphonia. The site was
redesigned and enhanced in 2011 with expanded sections along with videos and audio samples. In addition, the NSDA has recognized the impact of social media, and has a presence
on Facebook, Twitter, and Pinterest to continue to raise awareness and reach more people.
In 1999, to celebrate the tenth anniversary of the National Spasmodic Dysphonia
Association, the book, Speechless: Living with Spasmodic Dysphonia was published by the
NSDA. Speechless is the biography of NSDA Board Member Dot Sowerby’s experience with
SD as told to Betty Shonauer. Also, featured in the book are I Climb Over My Voice by Jean
Newcomer and An SD’rs Experience with Depression by French O’Shields, D. Min. Speechless
chronicles the beginnings of the NSDA and how the founding members transformed their
loss — the audible loss of their voices — into an opportunity to help others.
has made a tremendous
“NSDA
impact on my life. The wonderful people who make up the
organization helped me find a
doctor who could accurately
diagnose me, helped me understand the condition, pulled me
out of my SD-induced depression, encouraged and supported
me as I came to terms with it,
gave me direction to channel
my volunteer time and energy,
and introduced me to a new set
of friends. I am forever grateful
to NSDA. Thank you, everyone,
for making my life better! I
hope I can pay it forward, with
interest!
”
Karen Feeley
Author of Easier Done than
Said: Living with a Broken Voice
Diane Rehm, NSDA Honorary Board Member, has used her National Public Radio talk
show and her autobiography, Finding My Voice published in 2002 as platforms to educate the
public about this voice disorder and how SD has affected her life and career. She continues
to raise awareness about spasmodic dysphonia and has spoken at NSDA Symposiums in
2003, 2009, and 2013.
The NSDA conducted its first Symposium under the new organization structure in
Portland, OR on April 16, 2005, which was also World Voice Day. The response from the
community was gratifying with the number of attendees, support of the medical professionals led by NSDA Medical Advisory Board Member, James Thomas, M.D. and the incredible
enthusiasm exhibited by everyone at the symposium. Jimmie Rodgers, American pop singer
and songwriter whose career was significantly impacted by SD, was the keynote speaker.
Portions of the symposium were recorded and interviews of the medical professionals and
several of the attendees with SD were compiled along with the original NSDA Video starring Chip Hanauer to produce the NSDA DVD Understanding Spasmodic Dysphonia.
In December 2005, representatives from Patient Advocacy Groups (PAGs) in the dystonia
community, the Dystonia Medical Research Foundation (DMRF), the National Spasmodic
Dysphonia Association (NSDA), the Benign Blepharospasm Research Foundation
(BEBRF), Dystonia, Inc., and the National Spasmodic Torticollis Association (NSTA) met
to discuss the idea of forming a grassroots organization bringing dystonia-affected individuals together to speak out with a single, powerful voice on legislative and public policy
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Author Karen Feeley signs a copy
of her new book book for Altoona,
PA, Support Group Leader Minerva
Gordon.
Honorary Board Member and
Unlimited Hydroplane Racer
Chip Hanauer
issues that impact people affected by dystonia and their families. The Dystonia Advocacy
Network (DAN) was established in September of 2006, and through the leadership of
DMRF Executive Director Janet Hieshetter, has become an effective voice in advocating
for more research funding to study all forms of dystonia, including spasmodic dysphonia.
Each spring, members of the DAN visit Congressional Representatives and their staffs
in Washington, DC to educate them about the challenges of living with various forms of
dystonia and why more research is so critical to gaining better understanding of this disease,
and is the only path to better treatments and ultimately finding the cause(s) and a cure.
In 2010, the Dystonia Advocacy Network
honored Congressman Bill Young and
NSDA Advocate Emma Mattes presented
the award
In 2006, discussions began about a new book project which would be a compendium of
shared experiences from within the SD community. It began with an on-line survey sent to
contacts on the NSDA’s email database, and over 750 people shared their stories, experiences and suggestions about coping and living with spasmodic dysphonia. NSDA Special
Projects Facilitator Karen Feeley accepted the challenge to write the book with the support
and help of others across the SD community to do research, analyze the survey data,
compile the data in a useful format and write the medical chapter.
The book, Easier Done than Said: Living with a Broken Voice was premiered at the NSDA
Symposium in Salt Lake City in 2008 and was met with much praise and wide acceptance by the SD community. It is still much quoted today by people living with spasmodic
dysphonia. Once again, it was the generous support of the Million Dollar Round Table
Foundation (MDRT) that funded this project.
Honorary Board Director and NPR Radio
Host Diane Rehm presents Elizabeth J.
Bachini with the “Share Your Story” Essay
Award at the 2009 Symposium.
Over the last few years, numerous brochure and informational sheets have been developed
by the NSDA including information on treatment options, SD in the workplace, telecommunications options, and more, with the goal of providing information on how people can
live more effectively with SD and minimize its impact. To augment the print newsletter,
Our Voice, the NSDA established an electronic newsletter in 2012, e-Voice, that is e-mailed
bi-monthly to keep our members connected.
We start 2014, our 25th year, with the exciting news that Scott Adams, the creator of
“Dilbert”, has become an NSDA Honorary Director. Scott’s journey with SD is chronicled
in the current edition of the NSDA newsletter, Our Voice. We hope to continue to raise
awareness of spasmodic dysphonia with Scott’s help to reach a greater audience.
Vernette Kreck and Bernard Mixon show off NSDA books.
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NSDA Honorary Board Director and American Singer and Songwriter Jimmie Rodgers
signs autographs at the 2005 Symposium.
SUPPORT HIGHLIGHTS
Supporting people with spasmodic dysphonia has been part of the NSDA mission since it was
founded 25 years ago. The support of peers can help people cope with spasmodic dysphonia.
By sharing knowledge and feelings, spasmodic dysphonia patients can learn from each other.
In addition, they can take comfort in knowing that they are not alone. When support group
members share coping strategies, lend an attentive ear on challenging days, and demonstrate
a desire to be informed about treatments and research, it is empowering. Support groups
offer their members the opportunity to be and stay connected with others who empathize
about the impact of spasmodic dysphonia on people’s lives.
Similarly, the support of peers is in effect throughout the support network. Prospective
Support Group Leaders have a Coordinator who determines if they are viable candidates and
gives them preliminary information about what the role entails. Area Contact Persons have a
Coordinator who communicates regularly with them. Support Group Leaders have Regional
Representatives who communicate with them and answer questions that might arise. The
NSDA is proud of its support network, led by Mary Bifaro, the Support Services Director.
For the last eight years, the NSDA has published a quarterly electronic newsletter, Voices
of Support. It is sent to over 300 support leaders in our strong and vibrant network that
continues to grow. Our support leaders are quoted directly in Voices of Support and photos
are included. A summary of their important activities is included. During any given quarter,
between 25 and 30 support groups hold meetings. Many of them are highly organized with
an agenda, a speaker, and handouts provided to local memberships. Others focus on being a
place where members can gather to discuss how they are coping with spasmodic dysphonia.
On any given day throughout the year, NSDA support leaders are busy at work representing the mission and providing information and support to others. They communicate with
members, conduct meetings, organize awareness and fundraising events, invite guest speakers,
contact the media, and work on many other tasks.
Since 2005, in conjunction with the NSDA annual meetings, a Leadership Day specifically
for the volunteer leaders is held. This provides an opportunity to provide “support” and
training and allow the leaders to shine and share their successes. The event also affords the
opportunity to recognize and thank our tireless leaders for their outstanding service. They
serve our community with energy, enthusiasm, and empathy.
NSDA was a lifeline when I
“The
was first diagnosed with SD and
continues to be. After nearly
two years of progressively worsening voice quality to the point
of only whispering at work, my
job was in jeopardy, while the
ENT and other doctors claimed
there was nothing wrong with
my voice. Discouragement
and isolation set in, even with
supportive family and life-long
friends. Persistence finally
resulted in the SD diagnosis,
but I would need to wait three
months before treatment with
botulinum toxin could be scheduled. Meanwhile, my husband
discovered the NSDA website
and that there would be a
symposium in Portland in 2005
that we arranged to attend. It
was life-changing. On all levels,
from NSDA leadership, doctors
and meeting others with SD,
there was such warmth, support, understanding, wonderful
people and education involved.
We felt such a welcoming,
caring, family feeling from the
start. I met several SD friends
from across the country that I’m
still in touch with who shared
what getting botulinum toxin
injections was like and their
experiences. There is no connection like meeting others with SD
for the first time and the NSDA
supports us with wanting to go
full circle to reach out to help
others with SD in the same way.
Through the personal, dedicated and tireless leadership of
the Board, we are fortunate to
have excellent patient-focused
symposiums and other tools to
help us navigate through this SD
journey. The NSDA has kept me
and others afloat, encouraged
and hopeful for a cure one day.
Jan Lant
Sacramento, CA, Support
Group Co-Leader
Tampa Bay Support group
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”
RESEARCH HIGHLIGHTS
During a Dystonia Medical Research Foundation Research Update Conference in 2004,
President, Dot Sowerby, and Treasurer, Charlie Reavis, approached Christy Ludlow, Ph.D.
about the possibility of conducting a research forum on spasmodic dysphonia. After many
discussions about the viability and logistics of conducting this type of conference on SD,
Dr. Ludlow gained the acceptance and approval for National Institutes of Deafness and
Communications Disorders to host a conference.
NINDS Program Officer Lana Shekim,
Christy Ludlow, and Mark Hallett.
A significant milestone for the dystonia community, and especially the SD community, occurred in 2009 with the creation of the Dystonia Coalition (DC). The Dystonia
Coalition is a collaboration of scientists, institutions, patient advocacy organizations and
the National Institutes of Health — all united to advance clinical research for dystonia.
Funded in October 2009, the initiative is supported by a $6.2 million grant over five years
from the Office of Rare Diseases and The National Institute of Neurological Disorders &
Stroke. Dr. H.A. Jinnah from Emory University serves as the primary investigator and he
works with an Executive Committee to oversee all aspects of the grant. Integral to the
mission of the Dystonia Coalition are Patient Advocacy Groups (PAGs) that provide
support, collaboration, and bridge the gap between the researchers and the patients.
NSDA-Supported Grant Recipient
Dr. Christian Kell
Drs. Mitchell Brin and Andrew Blitzer
saved my sanity and
“NSDA
helped me feel less desperate
when I was diagnosed with SD
by providing me with information about research and
support. When I became a
Support Group Leader the
organization sponsored training
and provided technical assistance so that I could better
understand our disorder and
more effectively help others.
Nancy Livesay
Ocala, FL, Area Support
Group Leader
The first ever Research Planning Workshop on Spasmodic Dysphonia was conducted
on June 23-24, 2005 at the National Institutes of Health in Bethesda, MD. The two-day
conference was chaired by Dr. Christy Ludlow and attended by most of the leading healthcare professionals engaged in the clinical and research aspects of spasmodic dysphonia.
The outcome of this conference was a framework to guide future research projects for
spasmodic dysphonia. The peer-reviewed white paper from this conference was published
in Otolaryngology-Head and Neck Surgery in 2008.
One of the key projects of this grant is the development of a Spasmodic Dysphonia
Diagnostic Tool led by Dr. Christy Ludlow. This project has elevated the awareness of SD in
the research community and has resulted in an increased interest in SD-specific research. In
addition, the 5th Annual Meeting of the Dystonia Coalition took place on October 16-17,
2013 in Atlanta, GA. Chaired by Dr. Ludlow, the meeting brought together the leading
experts in the fields of otolaryngology, speech pathology, neurology, genetics, imaging and
epidemiology to focus on the state of spasmodic dysphonia research.
As a result of the work by the Dystonia Coalition, the Dystonia Brain Collective was
established at the Harvard Brain and Tissue Repository Bank in 2011. Working with the
DAN Patient Groups, to date, more than 40 people with SD have registered with the
Dystonia Brain Collective as brain donors to help contribute to the understanding of
spasmodic dysphonia.
Also in 2011, the NSDA was instrumental in launching first ever focal dystonia registry.
To date, over 3,300 people have registered, with all forms of dystonia. The Global Dystonia
Registry is designed to collect data on persons affected by focal dystonia(s), including
spasmodic dysphonia, to assist in future research efforts and clinical trials.
”
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MIDGE KOVACS ANNUAL AWARENESS AWARD
Since 1999, the NSDA has presented the Midge Kovacs Awareness Award
in order to recognize the outstanding efforts of one of its support groups for
their work the previous year to honor the pioneering advocacy work of the
late Midge Kovacs. Midge was a founding Board member of the NSDA. She
started an SD Support Group in New York in 1987 and published a newsletter,
entitled Our Voice, for patients and doctors in order to raise awareness about
spasmodic dysphonia. In a note to the NSDA community in 2000, Midge encouraged all of who
are struggling with spasmodic dysphonia to think beyond our own individual voice problems.
1999 John Hunsinger and the Atlanta, GA, SD Support Group
2000 Bill Vanderlinde and the Baltimore, MD, SD Support Group
2001 Sue Brammerlo and the Northern IL SD Support Group
2002 Mary Bifaro and the SD Support Group of Charlotte, NC
2003 Minerva Gordon and the Altoona, PA, SD Support Group
2004 Minerva Gordon and the Altoona, PA, SD Support Group
2005 Renee Urban and the SD Support Group of Austin, TX
2006 Sandy Viot and the Connecticut SD Support Group
2007 Linda Cannon-Mott and the Dystonia Support Group of Birmingham, AL
2008 Cathy Jacobs and the Chicagoland SD Support Group
2009 Lois Jackson and the DC Metro SD Support Group
2010 Martha Murphy and Paul Fowler and the Dystonia Support Group of San Diego County
2011 Tom Hofmann and the Naples-Fort Myers Area SD Support Group
2012 Ron Langdon and James Anderson and the Tampa Bay, FL, SD Support Group
of my NSDA volunteer
“Much
work is helping to set up new
Support Groups. One of the
most challenging aspects of this
role is to locate and select new
Support Group Leaders. I have
been fortunate over the years to
meet people with extraordinary
talents in business, education or
other professional backgrounds.
As very capable leaders, they
have helped literally hundreds of
people overcome the challenges
of SD. It has been very satisfying
for me to be part of the NSDA
organization. Leaders not only
help others but also benefit by
regaining their self-confidence
and grow both professionally
and personally. I have had the
opportunity to work with NSDA
senior management. They have
shown the highest level of
sincerity, dedication and ethics.
It has been a pleasure to work
with such people.
”
2013 Mary Ann Keller and the Greater Dayton, OH, SD Support Group
Mel Dubovick
US Support Group Developer
2014 Dot Sowerby and the Voice Disorder Support Group of Greensboro, NC
many years with undi“After
agnosed SD, I was extremely
Cathy Jacobs accepting the 2008 award with her husband Paul Tom and Caroline Hofmann with Mary Bifaro (right), 2011 Award
Paul Fowler and Martha Murphy accepting the 2010 award
at a local meeting of the Dystonia Support and Advocacy
Group of San Diego County.
relieved to finally know what
my problem was and get
the help I needed. A support
group, which no longer meets,
was very encouraging and I
was finally able to talk with
people who had the same
problems as me. It has been
six years now since my first
injection, and, although it is
not a cure, it offers some relief.
NSDA provides much needed
research, information, symposiums and support. Happy 25th
Anniversary. Hope you continue
with your good work.
Sally Velotta
Cleveland, OH
For their work in 2012, Mary Ann Keller and The Greater
Dayton SD Support Group received the 2012 award.
9
”
NSDA LEADERSHIP
so many reasons I am truly
“For
thankful for the online presence
of the NSDA and for the organization as a whole. Everything
from locating doctors, online
and in-person support groups,
research reviews, testimonials,
and advocacy make it possible
for us to navigate through a
rare, misunderstood and often
times isolating voice disorder.
When I realized there were no
support groups in my home
town I volunteered to start one.
Although we are just beginning,
it is wonderful to meet others
who are on the same journey.
The NSDA has made it possible
for people with SD to connect
with one another which is so
much a part of the process of
overcoming communication
obstacles. The NSDA website
is so well done! It is a platform
for discovery, education, and
sharing. It is truly a blessing to
anyone newly diagnosed with
SD and looking for resources
and support. I can’t forget to
mention the newsletter, Our
Voice. The latest volume featuring Dilbert Creator Scott Adams
is a great tool to create more
interest and awareness of SD
in our communities, especially
among professionals who
encounter the condition among
their patients.
”
Leah Garcia
Temecula, CA SD Support
Group Leader
does the NSDA mean to
“What
me? It means we are helping
ourselves — it gives us hope as
we negotiate the tricky currents
and obstacles SD has brought
to our lives. The NSDA is a
wonderful organization, with
wonderful people.
Honorary Board of Directors
Scientific Advisory Board
Scott Adams
Creator of the cartoon “Dilbert”
Christy Ludlow, Ph.D.
Chair, Scientific Advisory Board
James Madison University,
Harrisonburg, VA
Johnny Bush
Country and Western Singer
and Songwriter
Chip Hanauer
Unlimited Hydroplane Racer
Robert F. Kennedy, Jr.
Political Activist and Environmentalist
Jean Newcomer
Author
Diane Rehm
Host of the “Diane Rehm Show”
on National Public Radio (NPR)
Jimmie Rodgers
American Pop Singer and Songwriter
Daniel Truong, M.D.
NSDA Founding Medical Advisor
Gerald Berke, M.D.
UCLA, Los Angeles, CA
Craig Evinger, Ph.D.
SUNY Stony Brook,
Stony Brook, NY
Laurie Ozelius, Ph.D.
Mount Sinai Medical Center,
New York, NY
Chris Sapienza, Ph.D.
University of Florida,
Gainesville, FL
Carlie Tanner, Ph.D.
Parkinson’s Disease Institute,
Sunnyvale, CA
Medical Advisory Board
NSDA Board of Directors
Charlie Reavis
President
Marcia Sterling
Treasurer
Mary Bifaro
Support Services Director
David Barton
Immediate Past President
Fred Hosier
Larry Kolasa
Founding President
Stephanie Mendel
Dot Sowerby
Charlie Womble
”
David Barton
Immediate Past President,
Auckland, New Zealand
10
Robert W. Bastian, M.D.
Chairperson, Medical Advisory Board
Bastian Voice Institute,
Downer’s Grove, IL
Andrew Blitzer, M.D.
St. Luke’s-Roosevelt Medical Center,
New York, NY
Joel H. Blumin, M.D.
Medical College of Wisconsin,
Milwaukee, WI
Christy L. Ludlow, Ph.D.
James Madison University,
Harrisonburg, VA
Michael Rolnick, Ph.D.
William Beaumont Hospital,
Royal Oak, MI
James Thomas, M.D.
Private Practice,
Portland, OR
NSDA Support Committee
Mary Bifaro
Support Services Director
Mel Dubovick
US Support Group Developer
Pat Hill
Area Contact Persons Coordinator
Carol Doles
Eastern United States/Canada
Regional Representative
John Comer
Western United States Regional
Representative
Dot Sowerby
Internet Welcome Committee
Doris White
Internet Welcome Committee
David Barton
Bulletin Board Moderator
Will Blum
Bulletin Board Moderator
have had Spasmodic Dysphonia
“Isince
1988, and, without the NSDA
organization, I don’t know what I
would have done in dealing with
this disorder. I have been able to
get the information and tools I
need to continue with my group.
I have used the videos and written
material in lots of our meetings. I
always enjoy attending the symposiums when they are nearby. The
Leadership days are really beneficial
to all the leaders. I understand there
are many more cases of Spasmodic
Dysphonia being diagnosed which
I hope will mean we will get more
members to join the NSDA this year
and for years to come. Keep up
the good work all of you are doing
for us.
”
Jelaine Wood
Dystonia Support Group of
Southside, VA Leader
Members of the NSDA Board
over the past 25 years
It is with great respect and gratitude that we recognize
the Board Leadership of the NSDA and the contributions
they have made, and many continue to make, to the
organization. Listed in alphabetical order.
Norma Barer
David Barton*+ (2005-2010)
Lylia Bennett
Rita Bickerstaff
Mary Bifaro+
Mary Brady
Garry Brown
Laurie Cermak
John Comer
Jim Dorr
Jay Elliott
Ellen Frontis
Wanda Glaze
Billy Goldenberg
Don Holland
Fred Hosier+
John Hunsinger* (1997-2000)
Rick Johnston* (1994-1996)
Larry Kolasa*+ (1989-1994)
Midge Kovacs
Paula Machinske
Stephie Mendel+
Bruce Menk* (1996-1997)
Meredith Menk
Lance Miller
Sandra Miller
Charlie Reavis*+ (2010 to current)
Barbara Rood
Dot Sowerby*+ (2003-2005)
Barbara Stein
Marcia Sterling+
Larry Taylor
William Vanderlinde
Sherry Whitley
Charlie Womble*+ (2000-2003)
*Past/Current President
+ Current Board
NSDA Presidents, from left, Charlie Womble, Charlie Reavis, Dot Sowerby,
Larry Kolasa, David Barton, and Bruce Menk
11
NSDA CONFERENCES
has educated me about
“NSDA
SD by having symposiums that
I have attended over the years.
I have attended four different
SD Support Groups. I have met
people with SD from all over the
world who have taught me how
to live with SD. Everyone with
SD has a different experience in
dealing with SD.
”
Will Blum
NSDA Bulletin Board
Moderator
“
As for the NSDA, I think I would
have to say that it has made me
feel more strongly that I am not
alone. Even though consciously,
I realize that other people have
this, it’s a rare condition and it’s
not often that you find another
person with it. So the NSDA has
created a community for me,
and this community is always
welcoming and helpful. It’s nice
to feel that, and as part of that
community, I can help others
with it. It’s a complete circle.
1991
Irvine, CA
2007
White Plaines, NY
Minneapolis, MN+
1992
Ypsilanti, MI
1993
Nashville, TN
2008
Salt Lake City, UT
Tampa, FL+
San Antonio, TX+
1995
Dallas, TX
1996
New York, NY
2009
Charlotte, NC
Nashville, TN+
San Diego, CA+
1997
San Diego, CA
1998
Chicago, IL
1999
Victoria, BC Canada*
2010
Denver, CO+
Cleveland, OH+
2000
Royal Oak, MI
Greensboro, NC
2011
Orlando, FL
Milwaukee, WI+
2001
2002
Scottsdale, AZ,
Miami, FL*
2012
Phoenix, AZ+
St. Louis, MO+
2003
Washington, DC
2013
Arlington, VA
2004
Dallas, TX
2014
Des Plaines, IL
2005
Portland, OR
2006
Schaumburg, IL
*In conjunction with the Dystonia Medical
Research Foundation
+Regional Symposium
”
Marilyn Caplin
Providence, RI Support Group
Leader
NSDA sounds like an orga“The
nization but it so much more
than that. It is family. Due to the
nature of our voice disorder, we
find ourselves at times isolated
in this world, but the NSDA provides a place, no matter where
we are, to be with one another,
whether it be a symposium or
an online experience. I think that
is the best experience of all to
be able to go to a symposium
and be instantly accepted. The
people are wonderful. The NSDA
provides lots of interesting information and excellent speakers,
but it’s the people and the feeling of home that says it all.
”
Pat Hill
Area Contact Coordinator
Dr. Andre Reed, addresses the Central Regional
Symposium, 2010, Denver, CO
Mary and King Hughes
Central Regional Symposium Summary, September, 2011,
Milwaukee, WI. Symposium Speakers, from left, Seth Dailey,
Carrie Kalata, Robert Bastian, and Joel Blumin
NSDA Western Regional Symposium, April, 2012, Phoenix, AZ
From left, John Comer, Adrienne Simons, Larry Kolasa and
Mary Foster
12
NSDA IN PHOTOS
NSDA has had a profound
“The
impact on my journey with SD.
Anne Brett, John Hunsinger, and Lylia Bennett Dot Sowerby and Jean Newcomer
Pat Hill
Stephie Mendel and her son David
Drs. Richard Merson and Michael Rolnick
Mel Dubovick and Mary Bifaro
For years, I didn’t know what
was wrong with my voice and
then in 1992, I got the diagnosis
of spasmodic dysphonia, and
it made sense to me. When I
was first learning how to use
the internet, I came across the
NSDA Bulletin Board. From
there I went to my first symposium, and then another, and
another. Eventually, the support
group leader in Austin made
me the support group leader
because she said because of my
symposium experience, I knew
more than anyone else. It was
a pleasure serving the NSDA
and I hope to continue to.
Renee Urban
Austin, TX
”
amazing that a group of
“How
people, 25 years ago, gathered
Concetta Griffin, Carol Doles, and Vicki Orazem Fred Hosier and Glen Estrin
Lois Jackson and Dr. Kristina Simonyan Dr. Valerie F. Levitan and
Kimberly Kuman
Dr. Robert Bastian, Cathy Jacobs, and Susan Liebforth
President Charlie Reavis with Scientific Advisory Board
Members Dr. Christy Ludlow and Dr. Gerald Berke
together to formally establish
a supportive association that
continues to meet the needs
of those dealing with SD. Their
visions and goals for the group
were far reaching. Much has
changed in 25 years, yet the
wonderful support remains
the same. To me, the NSDA
stands for connecting, sharing,
educating ourselves and others
about SD, and raising funds for
scientific and medical research:
all with the ultimate purpose of
eradicating SD. How special to
know that each of us is invited
to share our talents, at whatever
level, and join the efforts of
those from 25 years ago, helping move our NSDA forward!
Mary Ann Keller
Dayton, OH, Spasmodic
Dysphonia Support Group
Leader
Charlie Reavis with Mark (left) and Kirk Hamilton
2009 NSDA Board of Directors
13
”
National Spasmodic Dysphonia Association
300 Park Boulevard • Suite 335 • Itasca, IL 60143
Phone: 800-795-6732 • Fax: 630-250-4505
E-mail: [email protected] • Website: www.dysphonia.org