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Retreat to Advance


When Dr. David Sirois, the IPPF’s BOD President, first approached me about joining the Board of Directors, I remember he had a needle in his hand and was about to shoot into a lesion in the back of my throat! It wasn’t a time for me to question him. But, I was dubious unsure about what my role would be and how I might be able to contribute to the IPPF’s mission.

When the novocaine wore off and the lesion had healed, I was still flustered what did I have to contribute. But Dave persisted and I am glad he did.

Since that time (just before the 2008 Annual Meeting in Dallas), I have learned a great deal about this organization and where we are headed. I more fully understand our mission, and I’ve learned more about this organization, its strengths and its challenges. But I didn’t really know my other BOD colleagues. I didn’t know their personal stories, what motivated them to accept a position on the Board, how they felt about the importance of making personally significant financial contributions to the organization and where they wanted the organization to direct its energies.

Dan Lee JaniceIn September 2008, the Board of Directors with members from different areas of the world, descended upon New York City for an intensive weekend retreat. Goals for the weekend were:

  1. ensure we have a focused strategy, a clear sense of mission and values, and an honest, open exchange of ideas
  2. align our individual and collective energy toward a common goal, and create a general strategy for how we will achieve that goal
  3. determine the skills, talents, and resources that reside in individual Board Members and fit those into the needs of the BOD and the Foundation
  4. re-energize this BOD to take an active role in the leadership of the organization, to recruit new Board Members who balance needs that are still unmet and increase the scope of our community of purpose.

These all sound like lofty ideas and way too much to pack into one weekend. However, we’ve already seen some changes stemming from the work we’ve started such as committee assignments that enable the BOD to better support the professional, yet stretched, staff at the Foundation who are committed to making a difference for each of us. Our role, as Board members is to carry out that vision with them for you the community of people who understand (perhaps most intimately) that our work is crucial. And we are ready to expand this theme to you.

In the coming months, you may be asked to give of yourselves. Yes, you will be approached for financial support in these tough times, and I encourage you to stretch yourself beyond the idea of a “gift” and consider an “investment” financially and personally into making the world a better place for those with P/P. Along with money, your stories, your ideas, your frustrations and your energy will be the fuel on which many of our future initiatives will run.

We all just survived another election season. The ads are gone; the stump speeches a mere memory. But let’s not forget the biggest lesson of that time not so long ago victory takes money, work, strategy, focus and (beyond all else) energy. Together, we can achieve anything!

And finally — I am convinced.

I’m certain that my passion to help others with pemphigus and pemphigoid will be of assistance to this organization in positive ways. And I am confident that you have something to share to help us achieve our mission. As we near a new year, I encourage you to think about the people around you in your neighborhoods, church and synagogue groups, clubs, and companies. Consider how you might be able to enlist their human resources to help us help others. You’d be surprised what a little teamwork can do!

Posted in Issue 54 - Fall 2008


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