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Your voice is important. Your opinions, feedback and concerns are the most relevant - you are who we are fighting for! Feel free to check back often and follow the conversation.
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One Voice, One Community
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Posted by: monkeyswithwings
January 28, 2008 |
There has been an extraordinary dialogue over the past week among a few advocates that recognizes the serious crossroads we face.
Do nothing and we continue the deliberate misunderstandings and misdiagnoses that has destroyed individuals and families for decades.
Unite in an International Coalition and we create change that ignites a glimmer of hope, where recovery is not just a distant dream, and if not for ourselves, then for those who follow in our wake.
Even from the depths of disease, it’s a responsibility we share. If not us, who?
This forum could be a vehicle that brings that discussion into public view.
Watch. Listen. Learn. Act.
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ONE VOICE, ONE COMMUNITY, ONE CAUSE
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Posted by: Pandora
January 30, 2008 |
Rik,
Watch, Listen, Learn, Act - I agree! Rich has given us a great opportunity and a viable forum to create a global village. Patients in the U.S. and abroad uniting ONE voice constructively can take enormous steps towards ownership of the direction of our future. It takes human relationships to accomplish what our patient community needs. This campaign is one of the first steps to UNITE US. The steps to follow will bring additional uniting issues that will make our global grass roots & advocacy efforts stronger than ever.
Marla Silverman |
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I'm with you
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Posted by: chngthname
January 30, 2008 |
It is now time for all us long time sufferers to stand up together and demand our dignity back, and demand the new name be taken up and the already many lab tests and treatments for our disease be used already! People have died with this, people have died alone with a pill bottle at their side or in a hospital with no care, crying because they felt so humiliated about something that is *not their fault.* We need to stand together. I won't be silenced again. I am a forty year old woman, I have lost two children to miscarriage and doctor's are now scratching their heads as to why? When I live near Yale University, and there is not one doctor in this entire state who really treats this disease or has earned my trust yet. This is not the end, this is only the beginning. I believe this time we can do it, and by the time I have a living child who is 5 years old, she or he will know that mommy has a disease but is a fighter- they won't see me as a humiliated, angry person left alone to wonder why no one will even look at the blood tests or stop smiling and denying me treatment. No more!! |
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