Category Archives: Issue 71 – Winter 2012

To Anna, the IPPF means hope when all hope was gone. For Steve, the IPPF means discovering hundreds of other patients when he thought he was alone. And Jack — Jack says he owes the IPPF his life. To me, the IPPF means helping my ‘pem-family’ find comfort, strength, and support through our dedicated staff and volunteers.
Phone calls and emails come in to our offices every day. Between the new patient calls and flare-up questions, there are little rays of sunshine that bring hope. Thousands of people around the world remember their first call, how the IPPF was there for them, and what the IPPF means to them. Now it’s your turn.
Please contribute to the IPPF this Holiday Season. Your donation funds essential, life-saving programs and services such as the Registry, Peer Health Coaches, Awareness, and more. And now you can be a Sustaining Donor! Our organization is lean, so a higher percentage of your money goes directly to the programs we offer and the research initiatives we sponsor.
You can safely donate online at www.pemphigus.org/give2012 or use the form below.
As I look back over the past year, I remember how many members of my pem-family I have talked with and helped with the gift of hope. I know for our Peer Health Coaches that number is even higher. This holiday season give the gift of knowledge, support… and hope.
Happy Holidays and Happy New Year!

PEM Friends Administrator, Sandra Turner, had to temporarily step down, so I’m back in the saddle for the time being. Thanks to the help of many people, PEM Friends, a support group in the UK, continues to be a strong and active support group.
Many who attend our London lunches travel from different parts of the country. Last year we even had one young lady from the Highlands of Scotland! From the start, our goal was to get as many people as possible together in an atmosphere of friendship and support. At the lunches, everyone is encouraged to move around the tables and exchange tales of their pemphigus and pemphigoid journeys. This informal approach has resulted in many strong and lasting friendships.
This year’s event was held in London on November 26, 2012, and organised by one of the group’s stalwarts, Isobel Davies. Despite the fact that she runs her own busy business, isn’t feeling well, and doesn’t live in London, she hosted a wonderful meeting. You’re an angel, Isobel!
Dr. Jane Setterfield, a UK leading PV and bullous disease dermatologist, once again kindly agreed to be our guest. Dr. Setterfield spoke one-to-one with anyone who wanted to discuss their disease while the rest of the group listened in. This helped us all learn so much.
We will be having another lunch towards the end of February 2013. This will be held in Leicester and our guest dermatologist will be another highly respected consultant who specialises in PV, Dr. Karen Harman. We are considering another ‘Away Weekend’ again in 2013. Details of these, and other PEM Friends events, can be found on our website at www.pemfriend.co.uk.

On Saturday, October 6, 2012, the Los Angeles Support Group held their annual gathering. We met at the Santa Monica Library and 22 people attended. Some had to drive almost two hours to attend, but all agree it was well worth it!
Attendees got to meet Lee Heins, Sonia Tramel, and Greg Wright from our Board of Directors, Senior Peer Health Coach Marc Yale, and ask guest speaker Dr. Vanessa Holland from the UCLA Dermatology Department disease and treatment questions. Dr. Holland said she looks forward to speaking at future meetings as well.
Lots of questions were asked and many focused on rituximab (Rituxan®) treatments and the use of CellCept® and IVIg. It was a terrific meeting because so many issues were covered. Everyone who joined us left feeling more informed and increasingly hopeful.
Prior to the start of the meeting, refreshments were provided by 2012 Annual Meeting Platinum Sponsor KabaFusion — delicious breakfast sweets and coffee! Joining the LASG was Nate Hughes, a representative from KabaFusion. Nate gladly handed out information and answered questions.
After the meeting, many us went to Panera Bread for lunch. Thanks to Marc, Panera Bread generously donated a percentage of each person’s bill back to the IPPF.
If you are interested in more information about the Los Angeles Support Group, please email
usa.ca.losangeles@pemphigus.org.

As I am writing this, I am trying to hold onto a delicate balance of my clinical psychology practice and a special birthday party/fundraising event. The expression “it is better to give than to receive” means much more to me, and when I see a window of opportunity, I go for it.
Normally, I skip having an actual birthday party, opting instead for a small group of close family and maybe a few friends, a casual evening, and cake. This year was different.
Initially I considered a nice vacation for my husband and me because this birthday was a bit of a landmark for me, and I did want to do something special. However, the more I thought about it, the more I realized that I really wanted to celebrate the fact that I was still alive. This reason was more evident as I recalled the past 12 years and my diagnosis with two very rare autoimmune diseases, amidst the losses of my parents and some family and friends. The question was: How could I celebrate my special birthday and life, AND use this as an opportunity?
A seed was planted.
When we think of planting seeds, many people immediately think about the Spring. Here I am in early mid-Fall having my “a-ha” moment. Interestingly enough, my favorite flowers have been tulips since my first visit to The Netherlands more than 40 years ago. Unlike most flowers, tulip bulbs are planted in the Fall and then come up beautifully in the Spring. I love how these flowers normally bloom earlier than most, and at night or in darkness, they close to protect themselves, reopening when it is once again safe.
A seed was beginning to metaphorically grow in my mind. Why not use my birthday to have a special party/fundraiser/event where guests would be asked to not bring me a personal gift, but rather contribute to a charity of my choice?
Great! Now I was going to have a big party and not just a small, intimate gathering. What would be my first step?
I began to assemble a list of family, friends, acquaintances, colleagues, and the physicians who have been helpful during my journey. The list was a lot longer than I expected.
I kept going through the list. I couldn’t find anyone I didn’t want to include in my celebration. And to compound the issue, I found myself adding more and more names. I even added some out-of-town people, including my life-saving physician, Dr. Razzaque Ahmed from Boston. My original dermatologist in Pittsburgh, Dr. Judy Small, had worked closely with Dr. Ahmed over the phone during the first six years of my treatment (until I had to change doctors because of insurance and facility/provider changes). How could I have a celebration of LIFE and not invite the doctor whose ‘alternative’ treatment of IVIg was the reason I was alive? Remember, IVIg was very controversial back in 2001.
Since it was for charity, I was willing to go that extra mile. I am not sure I was using my old and trusty cognitive model — without emotional interference — but I was determined to stay on track. Finally, I decided on a private club where a dear friend (and a Vice President at PNC Financial Services, a 2012 Annual Meeting sponsor), had generously offered to sponsor my birthday event.
I enjoyed creating the menus, invitations, and RSVPs. Thanks to some technical help from my husband, everything got printed and mailed. Will Zrnchik, our CEO, set up a special Web page for the party so people could donate online.
The RSVPs started coming in and more people than I expected were planning on attending! This was getting big. What about entertainment? I realized I know a lovely and accomplished young woman who is the founder and creative director of a local ballet company whose studio was originally leased to Gene Kelly before he went to Hollywood! She had choreographed a perfect piece just for my celebration that could be performed by two ballerinas.
This effort took a lot of time and effort, but it was a night to remember. The party brought together people who did not know each other, and might not see each other again, but who kept telling me they had been at the “fun” table. The funny part is they were all at different tables!
I was blown away by Dr. Ahmed’s attendance and the speech he gave to educate the important people in my life about the seriousness of my particular diagnoses (many were not aware of my conditions). Even my normally quiet, engineer-minded husband gave a very beautiful and emotional toast in my honor. I swear that if I didn’t also have Sjogren’s Syndrome I would have cried my eyes out!
Many of my guests asked me to make it a yearly event! While flattered, it probably won’t happen at the level of this one, but I will definitely have smaller cocktail-like parties at home and continue to request donations in lieu of gifts.
It feels so wonderful to have both a landmark birthday and a memorable evening and celebration with friends and family who donated to IPPF. The reality is anyone can do this on their own comfort level.
The bottom line here is from that original “seed” came an evening I will never forget and will help others because of generous donations. The icing on the cake is most of my doctors got to meet each other face-to-face for the first time. And, it looks like Dr. Ahmed will be invited to talk to Pittsburgh doctors, residents, and others in the near future with a hope that it could drive some to study and research pemphigus and pemphigoid.
I am thankful to the generous local merchants who provided many items, services and gift certificates for the Silent Auction.
Knowing that this fundraiser can be repeated in small ways over the coming years gives me far more happiness than any one-week vacation could possibly have given me. I am not special for having planned this event, but I get a warm and wonderful feeling just knowing that I was able to embrace a new way of giving. I can absolutely validate that it is far better to give than to receive.
If you have an idea, let that seed evolve. See where it takes you. We can find new ways of giving — whether with special skills, money, frequent flyer miles, volunteering time and services for one of the Foundations’ many committees, educating people, or supporting others emotionally. The list is endless, and you will feel better knowing you are making a contribution that makes a difference.
I am writing this shortly before Thanksgiving, and I will appreciate it more than usual. In recent years I, like many of you, have experienced many losses (people, pets, previously taken for granted good health).
But in many ways my life is now fuller. I have met amazing people and physicians whom I never would have met. As 2012 comes to an end, and the new year starts, move forward in your own way and make a difference. Your life will be fuller for it. That is a promise.
Just plant a seed.

‘Tis the season for giving thanks and celebrating the holidays with those we love. Things can become so hectic that we forget to thank those around us for being a part of our lives.
Personally, I am thankful for my parents and their advice over the years. “Bird” and “Pops,” as they are affectionately referred to, were never short on tough love or supportive words. I thank my lovely wife, Christina, for her loving support and encouragement that make me a better person. I am thankful for my children, Will, Haley, Alannah, and Noah, and hope each of them support causes dear to their heart.
I thank Janet Segall for bringing me into the IPPF and our Board of Directors for giving me the opportunity to work with our wonderful coaches, advisors, and patients around the world. The underlying theme: I am thankful for the support of others and do my best to pay it forward.
The IPPF does more than support patients — it supports caregivers, family, friends, and physicians. Thank you to Marc Yale and our Peer Health Coaches who collectively have closed more than 500 cases this year answering calls, emails, and postings from people all over the world. Many of our “veteran” patients still remember that scared feeling they had before calling the IPPF and how relieved they felt after receiving support and information. They now pay it forward, helping others in our community.
Recently, a newly diagnosed patient’s daughter called the office. You could hear the relief in her voice when I told her, “Your mom will be fine. Now let’s focus on helping you understand the disease and treatments.” After, she sent me an email thanking me for the information, but more for just taking the time to talk to her. I replied: “No, thank you for calling.”
Yes, thank you for the calls, emails, and interactions that allow us to support one another. You should feel good knowing your involvement helps others at a time when they need the IPPF most.
From my family to yours, have a safe and joyous holiday and a Happy New Year!