After more than two years in preparation, the Pemphigus & Pemphigoid Society opened for business August 1, 2003. The goal of the PPS is to provide patients and caregivers with a nonprofit organization that is highly effective, vigorous and frugal, and to raise funds for research into a cure for these two rare autoimmune blistering diseases.

"It's been a long time in coming, but the prep time certainly helped us get off on the right foot," said Sal Capo, President and Executive Director from San Lorenzo, a suburb of San Francisco. "We opened our doors with an extensive website, the first-ever patient publications and a team that makes coming to work highly productive and a joy.

Chief Medical Adviser is Dr. Francina Lozada-Nur, Professor and head of Stomatology at the University of California at San Francisco, and a faculty member of Stanford University. She is recognized internationally as a leading authority on pemphigus and pemphigoid with over 25 years of research experience. A staff of Contributing Editors helps find and evaluate the news for patients. Two of the Contributing Editors are also patients and that fact gives them a point of view that is unique and intimate. Dr. Edward Tenner is an eye surgeon from Illinois and Dr. Terry W. McDonald is a Clinical Psychologist in Pennsylvania.

Other PPS Contributing Editors include Professor Bobby Collins, MD, an Oral Pathologist from the University of Pittsburgh and Pharmacist Jarrod Weckerly, both of Pennsylvania; and Skip Van Lenten, M.A. from New Jersey, who specializes in nutrition and diet. In addition to these medical professionals, the PPS also features a Patient Advisory Council. This is a group of patients carefully selected to represent the larger patient population. On the Council are Madeline Stempkovski of Kentucky, Jeff Perry of Massachusetts, Dylan McIntosh of Minnesota, and Hermien Konnings of the Netherlands.

"We decided early on that in order to be successful and to provide the most responsive organization possible, we would need to continually seek the guidance of the patients. If a program does not directly benefit the patient, or if it is not as cost-efficient as we think it should be, we spend our time and money on programs that are."

"For example, we looked at the costs of printing and decided we could produce nearly all our publications in-house. This saves a great deal of money that we can now apply to programs rather than overhead. Plus there is the added benefit that we can produce the publications when we need them, and update them quickly and cheaply; so we never ship dated material."

"Staying in touch with constituents is key to success in any business," says Vice President Eileen Lucey of San Francisco." We spent many days and meetings just on defining our role in the pemphigus and pemphigoid community. We studied the mission statements, programs and procedures of many successful foundations before we spent our first nickel. We got the training from nationally recognized experts that showed us how to work effectively, efficiently and cheaply from the start."

"The Philanthropic Industry is generous with training and mentoring and the PPS is heavily networked in the nonprofit community. "One of our online support groups for nonprofit professionals had a discussion about the telecommunications. We learned that we could save a huge amount of money on the phone bill simply by using a cellular phone for the office. Long distance is free and so are all the incoming calls, which are the bulk of our usage. We'll save over $4,000 per year on the phone bill compared to offices that still use an old-fashioned wired phone line." And the funds saved on overhead go directly into patient programs.

"We are very proud of our publication and translation programs," says Marcia Pepper, a caregiver and long time community leader in the pemphigus and pemphigoid community.

"In a few weeks we will release the first "Patients' Guide to Pemphigus" and in spring we'll have one for pemphigoid." The Guide is a 36-page publication of current medical and patient information, with full-color illustrations and FAQs (frequently asked questions) that new patients need to avoid getting blind-sided by pemphigus and prednisone. "With Dr. Lozada-Nur and her associate Dr. Kari Connolly, a dermatologist and head of the UCSF immunology department, there is no question about the quality of the information."

PPS Secretary-Treasurer, Lori Mashek, a rehabilitation counselor for the State of Oregon in Portland, is the Board Director overseeing the Translation Program.

The "Essential Information" we're translating is written for both patients and physicians. In some third-world nations this will be the only information on pemphigus or pemphigoid in the native tongue. "We emphasize languages from countries where pemphigus and pemphigoid are most common or where there is an increased need," she says.

"We already have Spanish, Portuguese, Italian and Hebrew translations in the pipeline, Chinese and several other languages have been promised and we expect to have many more in the future."

"It's been hectic." says Mr. Capo. "The response has been very encouraging and just proves that research and hard work pay off. Volunteers have been climbing aboard since we started and with so many hands and minds involved, well, it is just very gratifying. I am certain the patients will see the value in the programs and services we offer and if we are true to our motto, I think we'll be all right."

For further information:

Sal Capo
President, Executive Director
The Pemphigus & Pemphigoid Society
510-755-4266
pps@1clever.org
1clever.org

The Pemphigus & Pemphigoid Society is a 501(c)(3) nonprofit foundation dedicated to pemphigus and pemphigoid patients and their caregivers. We provide emotional support and ongoing education about treatments, medications and recovery strategies, so patients may regain control of their lives as soon as possible. We work to bring a greater awareness to the medical community and the general public, and support research into cures for these rare autoimmune skin diseases. Because the Pemphigus & Pemphigoid Society is an all-volunteer foundation, 100% of your donations and grants go toward these goals.