Our Milestones

Posted on 24 August 2007.

This webpage is dedicated to letting you, our website visitor and potential donator, understand what we have accomplished since being provided our non-profit status in 2000. It’s been a long , hard journey that our Founder could have easily given up on, but her dedication to patients and dystonia has and is a ” Must and a First ” in all that she does today.

Our Milestones :

  • 1985 American ST Association forms.
  • 1989 Hemifacial spasms, jaw grinding and tics begin surfacing.
  • 1992 While in Europe Beka notices symptoms of cervical dystonia.
  • 1994 Our Founder serves as Secretary for NSTA , which is short lived as the group splits into 2 entities now known as www.torticollis.org and www.spasmodictorticollis.org .
    • ANDA- Coalition formed by Allergan, Inc., in hopes of forming one universal dystonia group, is also shortlived and not endorsed by all groups.
    • WeMove arrives on the scene.
  • 1998 Our Founder becomes a consultant for www.athenadiagnostics.org as the discovery of the DYT1 gene is publicized by the DMRF and scientists.
    • A chapbook of poems “Dystonia is ” is contributed to the DMRF.
    • Our Founder attends the International Dystonia Symposium in Victoria, BC, Canada.
    • Text for “Im Moving Two ” is written in 3 days and published. Excerpts online now.
    • The vision for multidisciplinary care begins to formulate in our Founders’ mind along with a Board of Directors , all being exclusively actively practicing nurses and allied healthcare professionals.
  • 1999 She, along with Deb Holton, Esq. aka Spazz, begin an online chat support group, eventually, becoming part of www.wemove.org online chat rooms.
    • NBC airs the struggles of our Founder on Dateline in October.
    • The Airing is the first time EVER that dystonia is presented to the public by the media.
    • Beka begins volunteering for the Bachmann-Strauss Fd. in NYC , while continuing to work FT as an ICU nurse at New York Presbyterian.
  • 2000 Together with her Board of Directors, ByLaws are formulated and nonprofit status is sought officially.
    • A donation of $1,300 from the local NSTA Washington, DC chapter helps our Founder develop a website breaking slowly into the goundwork of the Dystonia scene.
    • Since then, the yearly salary of Our Founder as an Open Heart RN within Manhattan , NYC is used to offset overhead costs. This still continues even today for C4D.
    • Care4Dystonia, Inc. does accept voluntary donations, but does not publicly solicit monies from patients or support groups on a formal, regular basis.
    • I’m Moving Two…Are U ? is released as a 263 page book of prose.
    • MyoBloc receives FDA approval for use in ST in Early December.
    • Botox receives FDA approval for cervical dystonia treatment in mid December.
  • 2001 501c3 nonprofit status is obtained by Care4Dystonia, Inc.
  • 2002 Additional media /inprint stories about dystonia are secured by our Founder.
  • 2003
    • Public Awareness continues on the part of C4D
  • 2004-5
    • Our Founder undergoes DBS
    • Foto Essay on DBS created www.parasphotography.com/beka.html
    • NBC Nightly News covers Bekas’ DBS Surgery and progress Video camera icon
    • Dr. Mike Kaplitt joins C4D as Medical Advisor
    • Additional media - TV, print, online- covergae continues
    • Repeat Dystonia Care Survey completed
  • 2006-7
    • Virtual Magpie revamps C4Ds website
    • In Motion Newsletter re-airs online
    • Magnet program initiated
    • Cosmo Awareness Program begun at Weill-Cornell
    • You Tube Are U at Risk ? Video developed online Video camera icon
    • Cosmo Awareness Ad developed Video camera icon
    • Our Publications go online
    • Newly developed tri-fold brochures created and distributed worldwide
    • Our Stories of Hope become a groundbreaking webpage for others to share their stories. Now being used by other non-profits.
    • ST Survey completed Oct 2007
    • LIM Campaign Coalition Membership maintained
    • HON Code Status maintained
    • Monthly EMail Alerts developed
    • By Dec 2007 , over 62k Unique Visitors visit the website.
    • Social networking begins via
    • Donation page updated, results in unexpected donations !
    • Dr. Oz meets Dystonia on XM Radio in Nov 2007
    • O’magazine captured !
    • Pain and Nutrition webpages expanded.
    • Educational Module planning begins with Virtual Magpie.
  • 2008-9

 Copyright.c4d. 2008.

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