NSTA is another major organization that is helpful to anyone who has Torticollis, sometimes called smasmodic torticollis or cervical dystonia.

 Although the organization is stupendis, there are a few people who stand out in my mind.  I attended a conference in Fountain Valley,  California several years ago.  That’s when I met Justin Aquines, then just getting started, but now the director.  I was so impressed with him and his knowledge, his personality and mostly his desire to help.  He has not let me down, nor will his assistants, Vi or Jean.  If you have questions or concerns, by all means don’t hesitate to call any of them at 800-487-8385 or e-mail them at NSTAmail@aol.com.

I would be remiss, if I didn’t mention the Vice President Diane Truong whom I also met on my trip to their conference.  Since then I have learned of her many trips to Washington and elsewhere to find funds and encourage research for all of us.  I must thank her for encouraging me to continue writing.  You see, I had only just begun writing at the time.  I’ve written two books on dystonia, “Learning, Coping, Living,” and “Hurricane Within Me” both available on my website bettelevine.com.  But, since then I’ve branched out to children’s books, knowing the little ones are affected by our disease, too.  Anything that will help children deal with any form of dystonia deserves a medal or at least a good book that can take their minds off their pain. Don’t miss typing “thetalkingbaseball.com” on the address line at my site.  You’ll be amazed at the story and the animated link  to a fantastic video on You Tube.  The book now comes with an electronic speaking baseball; so it’s a book and game, bundled together.  Buy one for a child especially a child that hurts and watch their faces glow!

You should know that I’ve made a commitment to all three organizations.  I intend to donate a percentage of all the books I sell to these organizations.  Help me to help them continue with their good work.  And, even though times are tough, if you can contribute anything, it will add up and help all of us in research and other ways of need.