Angels that have impacted the NSDA over the past 30 years
To my great friends in the NSDA Community,
As many of you know, I have lived with the voice disorder spasmodic dysphonia for more than 30 years and it has had a profound impact on my life in many ways.
Before my diagnosis, my wife and others in my life, thought that I needed psychological help. I can still feel the relief that washed over me when I found out I wasn’t crazy and there was a name for what was plaguing me.
In the late 1980s, I learned that Dr. Daniel Truong was working on a double-blind trial for the use of Botox as a potential treatment for SD. My wife hounded him and his staff for weeks until they agreed to let me be the unofficial first patient to receive an injection before the study began. Even though I was practically mute for weeks because the dosing was unknown at the time , I knew it was working. I was so excited for this potential treatment and that this could help people just like me.
The Idea for the NSDA
One night, I got a call from Dr. Truong. He told me that I was going to start an association focused on SD and I would be the president and that he would provide the initial money needed to get it off the ground. He said people with SD need help and support and that awareness needed to be built. He said someone needed to help others struggling with SD and that I was that person.
Nope I thought. Not me. Then I got a sign. I was in a Million Dollar Round Table meeting and the theme was Commitment. Those big, bold letters provided the message I needed to see. I called Dr. Truong and told him I would do it; I would make the commitment and start the association.
I don’t know if you believe in divine intervention, but I say that the path of the NSDA was paved by angels. Dr. Truong didn’t know what the organization would do, but he knew it was needed. I read that sign for Commitment and knew I had a calling. And over the course of the next 30 years, I can picture moments where angels intervened to insure the NSDA persisted.
30 Years: A Huge Milestone
In 2019, the NSDA celebrates 30 years. I think of all the difficult times, but I also think back to all the stories that have been told about how the NSDA helped individuals with spasmodic dysphonia. I think about how the average time between onset of symptoms to diagnosis was more than six years back in 1986 and how today someone can now get treatment within months of experiencing that first change in their voice. I think of the network of healthcare professionals that has grown and the database of those with spasmodic dysphonia who we regularly communicate with. I think about the explosion in research that has happened within the last three years. We know more about the SD than ever before. The NSDA has served a vital role in these advancements, of that I am certain.
My Birthday in Celebration of the NSDA
I am celebrating my 80th birthday this year and I want to dedicate this birthday to the NSDA. I want to raise money to keep the momentum going and ensure that they can continue the precious work I hold so dear. I hope that the NSDA is there when the bell rings because someone finally found a real cure.
So, I set a personal birthday fundraising goal of $110,000.
I know it’s a lot of money and could be considered impossible, but so was this little organization called the NSDA and 30 years later it is still critical and relevant to those with voice disorders. In addition, some very important people to me have agreed to double whatever is raised, up to $110,000.
So, I am asking you, to help me fund the organization that has meant so much to me and to thousands of others who live with voice disorders. Be one of the angels that I will forever think of when I look back at the NSDA’s history. Give with your heart. Thank you!
Gratefully, Larry Kolasa
NSDA Founding President and Current Board Member