GitOverIt
10-06-2005, 08:53 AM
Since this is Psoriasis Month I thought this might be a good look at what ADVOCACY is all about and how Sheila is going about it!
For the full interview (with photo) go to this link:
http://www.flakehq.com/archives/0705intv.htm
FlakeHQ Interviews:
Sheila Rittenberg
Director of Advocacy, National Psoriasis Foundation
Interviewed by Ed Dewke
in June, 2005
Sheila Rittenberg is the Director of Advocacy at the National Psoriasis Foundation (Portland, Oregon). I began my interview with Sheila knowing little about how the Foundation defined “Advocacy” or what Sheila’s job entailed. If I had to sum up what I’ve learned, I would say as Director of Advocacy Sheila must be a powerful persuader and motivator.
She has both personal and professional backgrounds that uniquely qualify her for the job. Her passion for Advocacy comes both from her beliefs that we need to make a difference for the under-represented and from the fact that she grew up with psoriasis. She has lived through severe, moderate and mild forms of the disease, and has experienced many treatments through different life circumstances. When Sheila tells someone how psoriasis feels, she’s speaking from the heart, from her own experience, and using language honed to persuade and motivate.
She brings expertise to her role at the Foundation from grassroots advocacy work, community development and marketing. A sociology graduate, Sheila’s career has been highlighted by initiatives involving public participation and improving access to services. She organized a major tenant-owned housing cooperative in Eastern Canada. Sheila has also been a Social Planning consultant who designed social and health services through extensive public participation. Sheila has worked in marketing communications and research for non-profits and corporations — work that no doubt prepared her well for her previous job as director of corporate relations for the Psoriasis Foundation.
I interviewed Sheila via email in June, and the experience was very much a Summer School of sorts. This isn’t, however, the first time we’ve heard from Sheila at FlakeHQ. Her personal essay about Capitol Hill Day 2005 was posted here in the May-June 2005 update. -Ed
*****
ED: Your title at the National Psoriasis Foundation is “Director of Advocacy.” Advocacy, or advocate (noun OR verb) are words that sound political. Please tell us what the word means to the Foundation and what the Director of Advocacy is all about.
Rittenberg: It's interesting, but one of the things we've struggled with at the Foundation is what to call this area of work so that people “get it.” When we describe our activities as “Advocacy,” it means nothing to some people, means the wrong thing to others and there are also people who are intimidated by the word. To us, Advocacy is bringing the voice of psoriasis patients to government and business decision-makers to improve conditions for those with psoriasis. Advocacy is standing up for what patients need. Advocacy is fighting for a cure. What sets us apart is that we believe that Advocacy is also empowering and engaging people in the community to do this work. Advocacy will never mean anything if the people-power is not behind the effort. But to be effective as a psoriasis advocate, it doesn't mean you have to march up the steps of Capitol Hill and run meetings with legislators. For some, Advocacy is going to Congress and helping us lobby for increased funding to support psoriasis research. For others, it's going to their local school or community group and finding a way to educate about the disease. Some people are advocates by appealing insurance decisions for the treatments they need. The important thing is that people take action when they are psoriasis advocates. They speak out, step up, get informed. One small action a day across a community can add up to a groundswell of impact.
For the full interview (with photo) go to this link:
http://www.flakehq.com/archives/0705intv.htm
FlakeHQ Interviews:
Sheila Rittenberg
Director of Advocacy, National Psoriasis Foundation
Interviewed by Ed Dewke
in June, 2005
Sheila Rittenberg is the Director of Advocacy at the National Psoriasis Foundation (Portland, Oregon). I began my interview with Sheila knowing little about how the Foundation defined “Advocacy” or what Sheila’s job entailed. If I had to sum up what I’ve learned, I would say as Director of Advocacy Sheila must be a powerful persuader and motivator.
She has both personal and professional backgrounds that uniquely qualify her for the job. Her passion for Advocacy comes both from her beliefs that we need to make a difference for the under-represented and from the fact that she grew up with psoriasis. She has lived through severe, moderate and mild forms of the disease, and has experienced many treatments through different life circumstances. When Sheila tells someone how psoriasis feels, she’s speaking from the heart, from her own experience, and using language honed to persuade and motivate.
She brings expertise to her role at the Foundation from grassroots advocacy work, community development and marketing. A sociology graduate, Sheila’s career has been highlighted by initiatives involving public participation and improving access to services. She organized a major tenant-owned housing cooperative in Eastern Canada. Sheila has also been a Social Planning consultant who designed social and health services through extensive public participation. Sheila has worked in marketing communications and research for non-profits and corporations — work that no doubt prepared her well for her previous job as director of corporate relations for the Psoriasis Foundation.
I interviewed Sheila via email in June, and the experience was very much a Summer School of sorts. This isn’t, however, the first time we’ve heard from Sheila at FlakeHQ. Her personal essay about Capitol Hill Day 2005 was posted here in the May-June 2005 update. -Ed
*****
ED: Your title at the National Psoriasis Foundation is “Director of Advocacy.” Advocacy, or advocate (noun OR verb) are words that sound political. Please tell us what the word means to the Foundation and what the Director of Advocacy is all about.
Rittenberg: It's interesting, but one of the things we've struggled with at the Foundation is what to call this area of work so that people “get it.” When we describe our activities as “Advocacy,” it means nothing to some people, means the wrong thing to others and there are also people who are intimidated by the word. To us, Advocacy is bringing the voice of psoriasis patients to government and business decision-makers to improve conditions for those with psoriasis. Advocacy is standing up for what patients need. Advocacy is fighting for a cure. What sets us apart is that we believe that Advocacy is also empowering and engaging people in the community to do this work. Advocacy will never mean anything if the people-power is not behind the effort. But to be effective as a psoriasis advocate, it doesn't mean you have to march up the steps of Capitol Hill and run meetings with legislators. For some, Advocacy is going to Congress and helping us lobby for increased funding to support psoriasis research. For others, it's going to their local school or community group and finding a way to educate about the disease. Some people are advocates by appealing insurance decisions for the treatments they need. The important thing is that people take action when they are psoriasis advocates. They speak out, step up, get informed. One small action a day across a community can add up to a groundswell of impact.