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From the Top

As you read this issue I’m sure that you will be as amazed as I am about all the ways that members of the community reach out to serve others. This is the Support Issue, our time to highlight, thank and congratulate people and projects that help individuals; support community groups; advocate with doctors; dentists and nurses; do research and write articles; work to get insurance or medicare coverage; serve on our Boards; present at meetings; write grants; throw teas, BBQ’s or events to raise money; or offer an open heart, warm shoulder, or understanding ear to others in need.

I was working with one of our Peer Health Coaches (see Susan’s story on page 7 for more info) the other day, who shared with me how she has been driven to contribute to change the experience of the next newly diagnosed patient and, in the process found what so many of you speak of — a powerful way to make a difference, to take your challenging experiences and use them to expand compassion and insist on better options for everyone. Your peers share this determination, and give of their time and talents in so many ways. Read over the great Awareness Building Campaign featuring Miki who has spread the word to over 1,700 Dermatology Physician Assistants around the US! Every talent can be used to help others.

We’ve been working on planning the Annual Meeting these last few months, (more at www.pemphigus.org/2010am) it’s like planning a family reunion, looking forward to seeing old friends and excited to embrace the newcomers with the warmth of this community. Many of you will be delighted to see

Janet, our Founder, Dr. Razzaque Ahmed from Boston, your Peer Health Coaches (PHC), members of our Board and Medical Board, your favorite doctors, our resource partners and Will, at another (or your first) Annual Meeting.

This year there will be topic-specific breakouts and a “track” for people interested in finding out more about becoming a PHC. Those interested can email Marc Yale (see Marc’s article on page 9) to indicate your interest in participating in the Peer Coach Track. We also have added, per your feedback, more Q&A sessions and more time to gather and connect. It is important for everyone in this community that you come, share your wisdom, show our power, and laugh, cry and connect with this amazing group. You’ll be glad you did, I certainly am!

Blessings!

Posted in Issue 60 - Spring 2010

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The P/P Registry has been approved by the Western Institutional Review Board (WIRB) and is actively enrolling participants.

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