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Faith, Vision, Sacrifice: Honoring IPPF Founder Janet D. Segall

Janet said, “I thought I would try to start the Foundation. Unfortunately, I was not prepared for the enormity of the task, and found it all quite over-whelming; so I gave it up; though I continued to look for others and gather information.” This was taken from The PV Foundation News, Volume 1, Issue 1, March 1995 – all five pages.
Nearly seven years before starting what would become the IPPF, its founder, Janet Segall, walked away because the task overwhelmed her. These diseases can do that to a person – overwhelm them. But she did find a way.

I woke up one morning to say, “I’m going to do it.”

Where would patients be today had Janet not found the courage to take pemphigus on full force But Janet was compelled to make a difference – and what a difference it was!
On July 31, 1994, the PV Foundation’s Board of Directors gathered in San Francisco. There, five people met to lay the foundation for this Foundation. Their first official meeting was in February 1995 after becoming a 501(c)(3) in October 1994.
There will always be adversity to face regardless of the reason; change is inevitable in life and unless a person can accept and overcome it, they will be consumed by it. Janet continues her efforts to champion change, advocacy, patient rights, and peer support on a much broader scale.
True to her original commitment, Janet continues to counsel pemphigus and pemphigoid patients, and now she will also offer her counseling skills to those with other autoimmune diseases.
The work Janet did with the Foundation was life-saving to thousands of people around the world. Statements like, “I would be lost without Janet and the IPPF” and “Janet saved my life” are commonly heard around the offices, on the Community Fourms, and in the Email Discussion Group. Luckily for the IPPF, patients continue to benefit from her knowledge and experience.
Janet is in the early stages of a new startup venture to educate and counsel patients regardless of their disease. Janet is scheduled to take additional classes that will add to her repertoire of skills and further benefit the patients.
What started as one woman’s journey for help became a unified effort of hope; a common hope…an uncommon bond. All of us honor Janet for her courage, wisdom, perserverence, and committment to our cause: finding a cure.

Posted in Issue 58 - Fall 2009


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