Our Milestones
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.
- See our entire media list 1998 to 2006 -Media Activities C4D
- 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
- 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
- Cosmo Awareness Ad developed
- 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 as well as reproduction by other websites.
- ST Survey completed Oct 2007
- LIM Campaign Coalition Membership maintained
- HON Code Status maintained
- Monthly EMail Alerts initiated
- 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 Interview in Nov 2007
- Pain and Nutrition webpages expanded.
- Educational Module planning begins with Virtual Magpie.
- 2008
- Grants obtained from : Solstice Neurosciences, Inc. and Allergan, Inc. and Mentor Corp.
- Kids in Motion created with Pen Pal alliances sent to www.drdcentral.com and www.tylershope.org
- Repeat On Air with Dr.Oz !
- Dystonia Education Forum begun online at http://community.wegohealth.com/group/dystonia
- Alliance with the National Pain Foundation.
- Media, Media, Media and Dystonia as a Disability.
- Redbook Inspiration Nominee.
- Loreal Women of Worth Nominee.
- www.aleve.com commercial submission
- Johnson/Johnson Discover Nursing Campaign
- Top 55 DBS Questions goes Abroad to the EU as a brochure !
- Nurse E-Zine - Accomodating for Dystonia Feb 2008
- Clarifying DBS Note Nursing Spectrum March 2008
- Dystonia Screensaver Slide Show-Downloads
- Journal of Neuroscience Nursing Article
- American Nurse Today DBS Dystonia Article
- Neurology Now June Editorial
- Buckley Broadcasting Alice Cooper PSAs released in April
- Oz Show DVDs available for purchase
- Dystonia Wallpaper available
- New ST brochure accompanies NEW T-Shirts Dystonia-ST
- C4D becomes a member of BOTOX DREAMS CAMPAIGN
- Silent Auction Collaboration with www.dystoniaassociation.org
- C4D joins the Justice for All Campaign to revamp the ADA Civil Rights Ammendments Act. The Act passes in US Congress in June.C4D is the only movement disorder non profit within this highly recognized coalition.
- Medscape Blogs renewed at http://medscapenursing.blogs.com/medscape_nursing/beka/index.html
Copyright.c4d. 2008.