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I have actively sought out meeting fellow P/P patients in lo- cations I like to travel. By doing so, I have made some great friends around the world. This past summer I wanted to recon- nect with friends in other countries. I had already planned to vis- it my closest friend in the world, Berna, who lives in Belgium. For me, these face-to-face meetings are very important. In fact, the first person I actually met face-to-face was Hermien from The Netherlands, and we found each other on the IPPF’s original dis- cussion group. Our first meeting was in April 2002 and I had just received my diagnosis the previous November. Hermien Konings took a train and met me in Leuven, Belgium. She brought my friend flow- ers and me some cereal, copies of all of the information she had on pemphigus, and a Vivaldi CD for relaxation. This was the first time either of us had met anyone with our disease, and neither of us can now remember how much we hugged one another that first day. As with other people I have met on this journey, you just seem to know that some relationships last forever. We have met on four different occasions over the last 10 years, including one PEM Friends “away weekend” at the beautiful home of Carolyn Blain in the UK. Hermien was instrumental in starting a support group in the Netherlands, and put together a major conference with IPPF Medical Advisory Board member Dr. Marcel Jonkman. In June 2012, I took a train to Amsterdam from Belgium. It felt so good to spend the day together talking, walking, and dining. We visited the new Hermitage Museum (wonderful Impression- ist exhibit) and other sights. We had a terrific day and our face- face together time continues to be incomparable. I returned to Belgium the next day with some photos — and lots of precious memories. Another wonderful person I had met was PV patient Oceane and her mom, Isabelle, at a PEM Friends luncheon in London in 2004. Oceane was then 7 years old, but beautiful and deter- mined. Since then, I had seen photos and stories about her diffi- culties and breakthroughs, but not had any contact.

During that time, Isabelle became active in the French support group. I was determined to reconnect with these special people.

The week after visiting Hermien, Berna and I traveled to Paris and to meet with Isabelle and Oceane. I quickly realized that after 8 years, young children really grow up. When I first met Oceane, she had been diagnosed with PV for two years and her doctors were worried about her being on systemic drugs at such a young age. Oceane had written about the difficulties she en- dured, even having to soak in
a tub at night just to remove her clothes. The good news is Oceane just turned 16 and is doing great! Isabelle shared some literature and material from their support group as we walked around Paris (Oceane and I definitely share a sweet tooth). It was a fun adven- ture where time passed too soon for our liking. Oceane gave my friend and me special cups used for relaxation in a Paris bistro- type of atmosphere. Saying good-bye was difficult
and emotional, but I am grate- ful to have met these wonderful people. The “I” in IPPF stands for International making these face- face meetings truly special times for those of us who are able to connect — and reconnect. These friendships carry the same un- common bond that brought us together. Crossing the “pond” was — and will continue to be — a very important part of my life. How lucky am I? My advice to you is if you have an opportunity, grab it!

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Can you believe Summer is here? The days have flown by in a whirl- wind of activity here at the Foundation and I would like to take a moment to fill you in on what is in the works. In case you have not heard, the 2012 Annual Meeting in Boston was a resounding success. It was a true team effort from Planning Day 1 through Sunday’s closing remarks. We ended up with nearly 275 attend- ees, speakers, and volunteers – more than any other meeting in our his- tory!

Attendees included patients in remission for 20+ years, to a patient diagnosed a few days before the meeting started. If you were there, then you already know how incredible this meeting was — and the fireworks were truly a coincidence!

If you were not able to attend, then you missed a doozy, but fear not: everyone can visit www.pemphigus.org/2012am and get copies of the program, presentations, and available audio. I would like to personally thank everyone who helped make this meeting possible – and the success it was! Turn to page 7 and see who made the 2012 Annual Meet- ing THE meeting to top! And don’t forget to mark your calendars: the 2013 Annual Meeting will be in San Francisco, April 26-28! Dr. Terry Wolinsky-McDonald’s “Psychologically Speaking” column will return next issue. If there is a topic you would like her to cover, please email her at terry@pemphigus.org. As we move into the second half of the year, the IPPF is focusing on in- creasing physician awareness. Remember when you, or someone you know, was first diagnosed with pemphi-what? Were you one of the lucky ones who was diagnosed in less than a month? Or even less than three? Most are not that lucky.

In 2011 the IPPF funded a study to determine how long it takes new patients to be diagnosed. The results indicat- ed patients see an average of 5 doctors over a 10-month span before receiving a proper P/P diagnosis. This does not have to be! With the right information available to physicians, patients could be di- agnosed in days or weeks, not months or years. Our goal is to increase pemphigus and pemphigoid awareness in the medical professions. During March 2012’s National Autoimmune Disease Awareness Month, we raised almost $10,000 towards P/P awareness. In April 2012, the IPPF was awarded a $15,000 grant from the Sy Syms Foundation to help with our Awareness Campaign! And recently, a special do- nor has pledged even more towards our awareness efforts! But we are not there yet! Awareness campaigns DO work! To get the most coverage among dermatol- ogists, dentists, and other specialties, we need your help! This summer we are asking everyone to con- sider a tax-free contribution specifically for our Awareness Campaign. You can donate online at www.pemphigus.org/donate, call our offices at (916) 922-1298 ext 1003, or mail in the form located inside the back cover. Please consider asking a friend or family member to support this very important effort. And don’t forget about Matching Gifts from your employer! Con- tact your Human Resources department for more information. The sooner we can fund this project, the sooner we can increase physician awareness — and the sooner pemphigus and pemphigoid patients will be diagnosed and treated. That means patients can begin their journey to recovery and remission sooner than ever before! Finally, thank you for your continued support and have a safe and happy Summer!!

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Summer has always meant a lot to me. When I a kid I played Little League baseball on the southern shores of Lake Michigan. One year, our team was a solid 0-10 (no wins, 10 losses). It was July 1 and it was my birthday. I was officially 11 and we were about to officially be 0-11. We were terrible!

My good friend, Marty, was pitching that day, and things started looking up. As we entered the final inning, we were winning, but we were three outs away from victory. I will spare you the Hollywood details: We won in “Bad News Bears” fashion…a little trickery and a lot of luck. We still were the worst team in the league, but that day we were winners. I happily celebrated my 11th birthday triumphant with my friends and family.
Recently I spent a weekend with friends and family at the 16th Annual Patient Conference in San Francisco. I have to thank our hosts, Dr. Peter Marinkovich and Bay Area Support Group Leader Prem Jain for having us in their home town. Other Conference Committee members included Dr. Terry Wolinsky McDonald (co-Chair/IPPF BOD), Greg Wright (IPPF BOD), Dr. Razzaque Ahmed (2012 Annual Meeting host), Nancy Stoeckel (KabaFusion and pemphigoid caregiver), Sonia Tramel (former IPPF BOD member), and Marc Yale (Peer Health Coach). The planning started in July 2012 and ended the day before the meeting started. This year’s event was a success for many reasons, but these people made it all happen. Thank you.

If you didn’t get a chance to join us or if you did and just want a refresher, the audio has been transcribed for your reading pleasure! And PHC Jack Sherman is producing segments that will have the slides and audio combined – and be available as a DVD! You can find the 2013 Patient Conference materials online at www.pemphigus.org

This also is the first newsletter being done by someone other than me since #39 back in 2004. Thank you to Maeve Norton for her layout and graphic design skills. We look forward to this and future issues. Volunteerism is becoming more and more important in our operations as we remain lean, but still provide high-level programs and roll out new projects to benefit our community.
In celebrating our P/P family and friends, we extend our congratulations to Toby Speed who was married in May, and honor the memory of Bob Stillman who passed away in April. We are a small community – a family – and events like these affect all of us. We continue to share in the joys and sorrows of life together as one.
I hope you enjoy the Summer ahead with your family and friends. Remember, we’re here for you!