Dystonia Neuro Movement Disorder

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Comment by beka on September 18, 2009 at 1:20am

Recommedable - the NEW Whitney Houston Album - I never knew MY OWN STRENGTH !!!

beka

Comment by beka on September 18, 2009 at 1:07am

The following press release went to NBC, ABC, GMA, AP, Reuters, Bloomberg News, The Examiner, Dateline NBC, MSNBC, Philly News, The Washington Post the Boston Globe, Medscape, WebMD, and other Disability Activitists and Civil Rights Law Firms across the country for disemmination of this high profile precedent case involving dystonia.
For Immediate Press Release

Ranked as the N. 1 Hospital in NYC, New York Presbyterian Hospital- charged with Americans with Disability Act Violations
A multimillion dollar lawsuit, after thorough review by the Equal Employment Opportunity Commission, has been filed and is proceeding against The New York Presbyterian Hospital in New York City by a current employee and our client at the Law offices of Akin & Smith for violating the Americans with Disability Act. Violations include failure to comply with a verbal and documented granted ADA Accommodation Request resulting in a hostile work environment, harassment, breach of contract, retaliation, and discrimination against a protected class in the setting of knowingly being aware of the our clients' disability, dystonia, a rare neurological, movement disorder and an implantable device. Nor were appropriate actions taken by the Medical Center in resolving or rectifying the reasonable accommodation request on behalf of our client who is being treated for dystonia with an experimental implantable brain device, deep brain stimulation in a timely manner. The actions on the part of NY-Presbyterian has led to wrongful or constructive discharge and discrimination on the job of our experienced Intensive Care Unit Registered Nurse. This is, by far, from a "nuisance case " as recently described by NYPs Counsel.

About the Equal Employment Opportunity Commission
Title I of the Americans with Disabilities Act of 1990 prohibits private employers, state and local governments, employment agencies and labor unions from discriminating against qualified individuals with disabilities in job application procedures, hiring, firing, advancement, compensation, job training, and other terms, conditions, and privileges of employment. Please visit the http://www.eeoc.gov

About Dystonia

Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are “competing” for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures resulting in impairment in meeting basic Activities of Daily Living. Please visit http://www.dystonia-foundation.org

About Deep Brain Stimulation
Deep brain stimulation (DBS) involves implanting stimulating electrodes into selected targets in the brain in order to mimic the effects of lesioning.The procedure began being applied to dystonia less than 10 years ago. It is estimated that just under 1,000 dystonia patients have been treated with DBS as a last resort treatment for intractable dystonia under the Humanitarian Aid Device Act.


For further information about this high profile, precedent law case, please contact

Derek T. Smith, Attorney at Law
Akin & Smith
305 Broadway, Suite 1101
New York, NY 10007
Phone 212-587-0760
Fax 212-587-4169
Email DTSLAWS@MSN.Com

I realize that I have kept quiet about this for a looong time, but finally the news is OUT. Hopefully , it will change the view dystonia is regarded by Employers. It is not an " alleged disability".
Thanks to all for the support you have given me the past few weeks.
beka

Comment by AmForPeace on September 14, 2009 at 2:13pm

I'm here ...... catching up.

Comment by Rogers Hartmann on September 13, 2009 at 2:16pm

Regarding my speech about Dystonia at TED, I will post confirmed information on my site. Again, so great for all with Dystonia considering the TED viewership.

Comment by beka on September 13, 2009 at 8:13am

WE ALL are doing things our own way to increase awareness and I applaud each and everyone of you for doing so. There is no wrong or right way to deal with the media , nor does one have to be in the field. to garner it. One has to be dedicated to the CAUSE of DYSTONIA. That's the bottom line re. awareness.
So, keep writing and don't be afraid to be heard...Someone is listening...You never know who that personality might be...

Comment by Nancy Muller on September 13, 2009 at 3:19am

I just wanted to share some information regarding genetics and dystonia in person's of the Jewish faith. If there are any members here on the board that are members of Hadassah, which is the largest Jewish women's organization in the United States and numerous other countries throughout the world, that there is a great "awareness" article in the latest August/September issue of Hadassah magazine about the research being done in Israel on dystonia at Hadassah Hospital. First of all, dystonia is very prevalent in Ashkenazi jews. As we know this conditon not only attacks adults young and old, but children too. The article stated the mutated gene implicated in dystonia is carried by 3-5% of Ashkenazic Jews, compared with less than 1% of the general population. Of course this refers to the DYT1 gene. All the work that is being done is in Israel at Hadassah Hospital. They are doing DBS and having amazing results with it, and they are also deep into stem cell research. It is an amazing hosptial and they also treat everyone that walks through their doors. They DO NOT discrimate against anyone race, creed, color, religion, etc. I can't say enough good about the hosptial. This really was an informative article and if anyone would like a copy, I'll be glad to send to you. This is WORLDWIDE awareness going on here by this magazine. The distribution goes to women numbering aout 300,00 in each state in the U.S. and more than 30 countries around the world. Imagine being able to touch that many people about dystonia and the high tech research and surgery going on in Israel. I was so happy to see the article in the magazine and hopefully it will be helpful to a whole lot of people int the U.S and other countries. I'm happy to answer any questions from anyone about what was in the article, too much to discuss here or send you a copy. My way of support, education, and awareness for the dystonia community.

Comment by Rogers Hartmann on September 13, 2009 at 1:51am

Yes, 2009. I will post the specifics once I know them. October 10th, 2009.

Comment by beka on September 12, 2009 at 10:49pm

Is this the www.ted.com conference for 2009? If so, You are not listed as a speaker or a within their list of Talks. Nor is Dystonia a theme within the conference. You are only listed within their online community.
Please provide the group with correct information as it comes in.Thanks so.

Comment by Rogers Hartmann on September 12, 2009 at 2:49am

Just in response to the moderator's question from a few days back...I am not allowed to post media until it is done and has a confirmed air date, so I must educate the members of this forum that that is how it works -- not in the way the moderator is suggesting it works. If members do not know TED then go to www.ted.com -- Bill Gates, Steve Jobs, Bono, Jane Goodall, on and on...I feel beyond honored to have been invited. The viewership alone will help us. October 10th, 2009.

Sadly, my fellow patients must be patient until I am allowed to post about other air dates and such.

Best wishes as we all do our own part. Some more than others, but that is how it should be. xo

Comment by Sarah UK on September 11, 2009 at 4:26am

Well done Rogers you're doing a great job for all of us.

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