Annette Czernik, MD, Conference Co-Chair and Mount Sinai Hospital assistant professor and dermatologist, along with IPPF CEO Will Zrnchik, kicked off the conference with an exciting overview of the weekend’s events. The conference included guest presentations by scientists and clinicians; a speaker panel with a lively Q&A; a panel of patients at different stages of disease; 11 workshops on topics such as nutrition, oral care, and dealing with stress; and special guest talks by Mark Lebwohl, MD, professor and dermatologist at Mount Sinai and current president of the American Academy of Dermatology, as well as New York Congressman Charles Rangel.
IPPF Board President Badri Rengarajan, MD, provided attendees with an IPPF update. Dr. Rengarajan introduced staff and fellow board members. He also discussed plans for the coming year regarding Peer Health Coaches, Patient Education calls, clinical trials, fundraising, and further advances with the Awareness Campaign. Later in the day, a panel of the IPPF Board of Directors answered questions about finances, research, and the goals of the
Awareness Campaign Manager Kate Frantz spoke about the Campaign’s exciting developments, including the Awareness Ambassador Program, which trains volunteers to raise awareness among their local dental community. She highlighted the role that Patient Educators have played this past year in anticipation of the coming year’s plan to visit 19 dental schools to educate dental students and faculty about P/P. Kate also shared the recently developed Awareness Campaign website, brochures, and videos.
The conference then segued into introductions of P/P. Dr. Czernik gave an in-depth look at pemphigus while thoroughly explaining the basics of the disease. Jacob Levitt, MD, and Mount Sinai associate professor and dermatologist, took his turn at the podium to explain the essentials of pemphigoid. These talks have been favorites at past conferences, and the IPPF couldn’t have asked for more knowledgeable dermatologists to explain the “101” about the diseases.
Sergei Grando, MD, PhD, IPPF Conference Committee member, and University of California Irvine professpr and dermatologist, led a discussion on “Challenging Conventional Treatments.” Dr. Grando is a great friend to the IPPF and works with many P/P patients each year. He presented his thoughts on the ins-and-outs of steroids, immunosuppressants, Rituxan® (rituximab), and IVIG (intravenous immunoglobulin therapy), then focused on IVIG. Dr. Grando has immense experience in treating P/P patients with IVIG. He has seen many patients go into remission after using this treatment.
Rituximab is currently one of the most popular treatments among P/P patients, and there is always lively discussion at the patient conference of its use in treatment. Grant Anhalt, MD, professor and dermatologist at John Hopkins University, discussed the various protocols that can be used for P/P patients with this treatment, what patients can expect from it, the side effects they may experience, and more.
Neil Korman, MD, PhD, director of the Clinical Trials Unit of University Hospitals Case Medical Center and professor of dermatology at Case Western Reserve University School of Medicine, delivered three talks over the weekend. Dr. Korman’s first talk focused on emerging treatments and clinical trials. He guided the audience through current clinical trials that various pharmaceutical companies are administering. He explained which treatments are being tested, how they work, how they differ from current treatments, and what can be expected from the treatments and trials. Later, he went into greater detail about how clinical trials are administered, how the protocols are developed, and how recruitment is done.
At the Foundation, we work extensively with Animesh Sinha, MD, PhD, professor and dermatologist at the University at Buffalo. At each conference, Dr. Sinha and his team set up a blood draw station to collect blood samples for patients and their relatives for testing. Dr. Sinha took his turn at the podium to encourage audience members to donate blood to further his lab’s research on identifying genetic markers of P/P. Dr. Sinha also presented his team’s discovery of the HLA gene associated with PV. He explained the difficulties of determining the causes of P/P and finding proper treatments. You can read more about his group’s published findings in the Spring 2015 Quarterly “Research Highlights” column.
We also convened a panel consisting of Drs. Czernik, Grando, and Anhalt, which allowed conference attendees to ask a variety of questions.
The IPPF often focuses on patients, but we also understand the importance of caregiving and how caregivers need to be taken care of as well. Sheila Warnock, founder and president of SharetheCaregiving, Inc., discussed the importance of taking time for oneself, asking for help when one needs it, and other caregiver needs. She reminded the caregivers in the room how challenging their jobs can be at times, and that it is okay to struggle, but they should always make their own needs as much a priority as those of the patient.
Congressman Rangel gave a compelling speech on the importance of having a voice in politics and advocating for what you want and need. He encouraged the audience to fight for their rights and to be aware of the effect that Congress has on their health. He shared that change is created when individuals advocate for legislation that affects access to care and treatment. This extremely important to rare disease patients.
One of our most dedicated patient advocates at the IPPF is Marc Yale. He took the stage to motivate patients to be their own advocates. Marc gave examples of how advocacy can make a difference in patients’ health, especially when dealing with a rare disease, and how this will make a huge impact on future patients. Marc was empowering. Along with Hannah Heinzig, Carlos Campo, and Bryon Scott, Marc later shared his experiences of empowerment through advocacy. The Awareness Campaign team members each shared their journeys with P/P and how they have empowered themselves through raising awareness.
Dinesh Patel of BioFusion gave a presentation on navigating reimbursement for IVIG.
One of the most compelling discussions at the conference was a unique dialogue between Dr. Czernik and PV patient Esther Nelson. Dr. Czernik asked Esther questions about her PV, how she felt, what the diagnostic process was like, receiving treatments, and living with the disease. Esther very honestly and bravely shared her roller coaster of experiences in dealing with PV.
Finally, there was a very touching and powerful panel discussion during which a PV patient and board member, along with his father, mother, and sister, shared his story of diagnosis, severe disease activity, and travels to Maryland to see Dr. Anhalt for treatment.
To view presentations from the conference please go to pemphigus.org/get-involved/
The 2016 Conference date and location have yet to be determined, but will be made available soon.