Category Archives: Issue 53 – Summer 2008

Nearly all members of the IPPF Medical Advisory Board attended the autoimmune blistering disease meeting in Japan and many gave presentations on new research in pemphigus and pemphigoid. Clinical speakers from the MAB included Dr. Jean-Claude Bystryn, who spoke about rituximab experience in the USA, and Dr. Pascal Joly who spoke on his rituximab experiences in France. General discussion centered around the design of a new clinical trial of rituximab for pemphigus to be conducted in Europe that will be coordinated by Dr. Joly using different dosing schedules.

The other main discussion was about the development of accurate and clinically useful scoring systems for pemphigus and other AIBDs. Dr Michael Hertl, Germany, spoke on a scoring system proposed by the German group, termed the autoimmune bullous disease intensity score (ABSIS), one of the two present scoring systems. Dr. Victoria Werth, USA, presented on the comparison study performed with patients last August at the University of Pennsylvania, in terms of reliability and validity of two outcome instruments for pemphigus, as well as the international Pemphigus Disease Activity Index (PDAI) and the ABSIS.

Dr. Deede Murell (left) and Dr. Victoria Werth.Presentations on the first day covered the pathogenesis of pemphigus and included IPPF MAB members Dr. Luis Diaz and Dr. Sergei Grando. The chairmen of the meeting included Dr. John Stanley and Dr. Masa Amagai. Other world leaders on the causes of pemphigus presented their new work, including scientists Kathy Green (Chicago), Peter Koch (Denver), Andrew Kowalcyk (Atlanta), and Eliane Mueller (Switzerland), along with dermatologists David Rubenstein (Chapel Hill), Carlo Pincelli (Italy), Aimee Payne (Philadelphia), Yumi Aoyoma (Japan), John Zone (Salt Lake City) and Detlef Zillikens (Germany). Topics included signalling pathways, apoptosis, new animal models of blistering diseases and the role of the immune system.

The International Pemphigus Definitions group held a meeting organized by Dr. Dedee Murrell (Australia), with the help of Dr. Takashi Hashimoto (Japan), at which Dr. Werth presented the international photovalidation study that is underway to compare the two different scoring systems using photographs, so that more experts can participate.

Additional participants in these meetings included MAB members Dr. Russell Hall (Durham, NC), and Dr. Neil Korman (Cincinatti) and blistering disease experts Drs. Kim Yancey (Dallas), Robin Eady (London), Leena Bruckner-Tuderman (Germany), David Woodley (USC) and Giovanna Zambruno (Italy).

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Leadership starts at the top and nowhere is that more evident than with the President of the IPPF’s Board of Directors. Dr. Dave Sirois has been instrumental in leading the Foundation to new levels of success. That being said, having the right people in the right places allows the IPPF to continue forward on our journey to new heights.

Joining the IPPF Board of Directors are Dr. Badri Rengarajan from California and Mrs. Rebecca Albrecht-Oling from New York.

BADRI RENGARAJAN

alt Badri Rengarajan is a member of the Lehman Brothers biotechnology equity research team supporting financial markets evaluation of development- and commercial-stage biotechnology companies.

Badri has over eight years of interdisciplinary experience in business strategy, product development, regulatory/clinical analysis, and investment evaluation. He is responsible for assessing clinical studies and pipeline compounds.

Previously, he was the regulatory lead for several projects in Genentech’s portfolio, including Rituxan (lupus and indolent non-Hodgkins lymphoma), Tarceva (lung and pancreatic cancer), and anti-NGF (pain), for which Badri crafted regulatory strategy, successfully executed several regulatory filings, and negotiated with the FDA. As a member of Genentech’s regulatory intelligence group, Badri synthesized product approval histories for over 100 oncology, cardiovascular, autoimmune, and specialty therapeutics. Badri began his career in management consulting with McKinsey and Company where he served clients in biotechnology, pharmaceuticals, and devices.

Badri earned his bachelor’s degree in Biology and Public Policy from Harvard University and his M.D. from Yale University, where he received a nomination for best thesis project.

REBECCA ALBRECHT-OLING

altRebecca Albrecht-Oling coordinates the Library Instruction Program at Purchase College, State University of New York, which focuses on training students, faculty, and staff how to frame information needs, create effective research strategies, and use the library’s resources to execute those strategies. Rebecca is also the liaison for Assistive Technology needs in the Library (coordinating this with Counseling services and computing services on campus). Her collection development responsibilities include literature and Jewish studies. A graduate of Kent State University (M.L.S.), Kansas State University, (M.A.) and Purdue University, B.A., she writes extensively on literacy and electronic resources.

Rebecca admits she has the Gift of Gab and has been a huge resource in attracting gifts and grants to the IPPF as well as to campus library collections. Rebecca and her husband Scott were a bright addition to our Annual Meeting in Dallas, despite missing their two children.

We would like to invite you to be part of our new pemphigus/pemphigoid Health Management Program. This program was specifically designed at Centric Health Resources with the help of the IPPF Medical Advisory Board members and staff. With this information, we will be creating a registry of information about the impact of pemphigus/pemphigoid on patients. This will open the door to improved treatments for current patients and provide information to further the chances of finding treatments with less negative impacts — for generations to come.

Many of you already know me as Director of Patient Services for the IPPF and a pemphigus patient myself. I will be your Peer Health Coach and I will be the person you will be talking with to complete the data collection. After you complete the Enrollment and Consent Form and return it to the IPPF, I will call you to set up an appointment to complete our initial survey. During our call, which will take approximately 30-45 minutes, I will ask you specific questions about your disease process: what drugs you are on, if any; what side effects you might be having; additional health problems that might have occurred due to treatment, etc. Depending on where you are with your disease process that will determine any follow-up contacts. We expect that through this relationship and with the additional support materials for you, your caregiver and your doctor, you, personally, will achieve better health and improved quality of life.

This is a voluntary program, but we need your participation to be successful. Your participation is critical to achieving these goals. Whether you have active disease or not, we need you to help us gather information to help future patients with diagnosis, treatment and cure. The Enrollment and Consent Form and a brochure outlining information about the program are on our website at www.pemphigus.org/hmp or we can mail them to you. If you decide to enroll, additional documents will be sent to you. This Health Management Program will help to increase knowledge about pemphigus and pemphigoid, which will ultimately lead to more funding toward research to find a cure.

 

Many of you already know that my garden is a fundamental aspect of my life. I find each dimension of the garden — the change of seasons, the plants that open in the morning and close at night, the patch of sunlight created when I lost a branch in the storm — to bring its own opportunity for grace. I noticed it this morning in particular, as this bouquet of lovely peach roses dropped its petals after a couple days in our 100 heat. The petals that lay on the counter top however, were the most intense yellowy-pink with deep magenta edges. It was magnificent, the dried, dying petals. Part of the grace that is delivered to me from the garden is a (sometimes forced) appreciation for what is unfolding.

So, I’m excited to highlight here, for you, some of the changes that we’ve been putting in place at the IPPF and some of the dreams we hope to make into realities over the next year. I hope you’ll find them to be of benefit to you personally; that you’ll see how they help the IPPF serve more and better; and that you will consider sharing with me your expertise, provided from your perspective as a participant in this organization, so that we may serve in the most meaningful way possible.

I know none of you would miss it, but please consider this a jumpstart encouraging you to read Janet’s letter on page 3. There she describes our Health Management Program, the most critical project we are engaged in for 2008. Please offer 30 to 45 minutes of your time to help us document a disease registry that will be the foundation for improved diagnosis, improved treatment protocols, and more extensive research. It’s a small legacy of time that you can leave which will make a huge difference for generations to come.

Also, if you do business on the Internet, take a look at the more than 30 hours Will has spent organizing and simplifying our web site at (www.pemphigus.org). All the informational content remains, however the layout is expected to be more clear and intuitive. In addition, I hope you come to enjoy the brighter colors and our new logo, designed to prepare us to catch the attention of grantmakers and corporate partners and pharmaceutical contributors.

Finally, we have already started preparations for the 2009 Annual Meeting which will be in Los Angeles April 25, 2009, it’s a great chance to learn, share, console, and laugh.

Please continue to join us as we move forward to use the registry as a resource to pursue NIH funding, to train current practitioners in earlier diagnosis and more effective treatments, to support the next generation of dermatologists to gain experience, and to fund and support scientific advances in the effective treatment protocols. And continue to let us know what changes you’d like to see!

Warm regards,