Harnessing New Media for Patient Advocacy (Part II)

Posted December 9th, 2009 by

A few weeks ago, I was invited to present on behalf of PatientsLikeMe at the Arthritis Foundation workshop held in Newport, RI.  The presentation was on how to “harness new media for patient advocacy” – the same as what I presented at a workshop for non-profits in northern New England in August.  This time the audience included non-profits in the southern half of New England.  Among those in attendance were representatives from organizations that mean a lot to us, and our patient communities, including regional branches of the American Parkinson’s Disease Association, CFIDS & FM Association, and the Epilepsy Foundation.

af-ri-kennedy-pejpg

One of the highlights for attendees was an impassioned keynote speech by Rep. Patrick Kennedy (pictured above with me and my wife Emma) who advocated the use of the web to support mass organization of patients with serious and chronic illnesses to accelerate research and improve standards of care. We couldn’t agree more.  It’s exciting and validating to know influential decision-makers are recognizing the potential of communities like PatientsLikeMe.

PatientsLikeMe member pwicks


3 Comments

  1. THANK YOU FOR THIS WEBSITE. I AM CONSTANTLY TELLING SCHOOL OFFICIALS, TEACHERS, SOCIAL SERVICES, LAW ENFORCEMENT AND EVEN MEDICAL PROFFESIONALS TO DO RESEARCH ON MULTIPLE SCLEROSIS, I HAVE CALLED THE STATE JUSTICE DEPARTMENT FOR THE FEDERERAL DISABILITY ACT. THE DEHUMANITIZATION OF THIS DISEASE AND THE EFFECT IS HAS ON OUR CHILDREN IS RIVOTING. I ACTUALLY HAD A VERY UNDEREDUCATED SCHOOL SECRETARY THAT KNEW I HAD MS IN A VERY AFFLUENT NEIGHBORHOOD IN A SUBURB OF AUSTIN TEXAS CALL CHILD PROTECTIVE SREVICES AND THE POLICE ON ME. THE SCHOOL WAS TOLD I WAS IN A FLARE UP AND THE DOOR WAS TOO HEAVY. THEY TOLD THE POLICE I WAS DRUNK. THEN CPS STARTED COMING REGURALY DRUG TESTING ME. I HAVE HAD MY EIGHT YOUR OLD TRAUMATIZED AND HER CHILDHOOD RIPPED FROM HER. I AM SUING NEIGHBORS, SCHOOLS AND MANY OTHER PEOPLE FOR CIVIL RIGHTS VIOLATIONS AS WELL AS DEFAMATION OF CHARACTER AND HARRASSMENT. WE NEED TO GET THE WORD OUT BIGGER BETTER AND LOUDER ON THE DISEASE.WE CAn’t let it hurt our kids, when it already hurts the patients so so much. ANY ATTORNEYS THAT WISH TO HELP OR NEWS MEDIA THAT WANT TO BRING THIS ON THE MAP IF IT HAS AFFECTED YOU OR YOUR FAMILY, I AM INCREDIBLY STRONG AND HAVE A HUGE NETWORK FOR BACKUP. PLEASE CONTACT ME THROUGH THIS WEBSITE OR BY COMMENTING.YOU MAY ALSO FIND ME ON MYSPACE. THANK YOU AND GOD BLESS.

  2. Just at this very minute I am aggressively fighting not only Parkinson’s but Epilepsy and Acute Rheumatoid Arthritis. The amount of mail I receive daily is huge. My phone never stops ringing and because of this I hope in some way I am making a mark on solving the puzzles in these diseases. I was so tickled when I saw the Arthritis Foundation getting on board with Parkinson’s and Epilepsy. So many Pd patients progress on to these diseases as the illness gets worse and because of the huge amount of pills needed to fight these, they stop treatment and chose to die. Research is lost at this time and cross referencing stops. A plus in PD research will be a plus for all Neurological diseases and the world needs to realize how many with PD develop other diseases later through stress….Thank you PLM for fighting for those who can no longer fight love Pokie

  3. hi friend!!YOU ARE NOT ALONE!! I SUFFER FROM PANIC DISORDER!! I AM ON 5 DIFFERENT MEDICATIONS. I LIVE IN MASONTOWN PA. I AM UNDER MENTAL HEALTH CARE. I HAVE SUFFERED WITH THIS CONDITION SINCE 1983!! IT TOOK MANY YEARS TO FIND A DOCTER TO TREAT ME. THANK GOD SOMEONE BELEIVE IN ME!! PLEASE EMAIL ME!!

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