Healing Heroes are the heart of our community. They go above and beyond to support the IPPF community by making sustaining, monthly gifts to support our mission of improving the quality of life for all those affected by pemphigus and pemphigoid. Join Toby and become a Healing Hero today.
Do you remember being diagnosed?
That feeling of being alone with a rare disease?
Most newly diagnosed patients have never met another person with pemphigus or pemphigoid (P/P).
That’s where IPPF Peer Coaches come in.
An IPPF Peer Coach is often the first person a patient connects with who “gets it.” Here’s your chance to make sure that the Peer Coach program can continue.
A monthly gift of $30 or more allows IPPF Peer Coaches to support 75 members of our community by providing them with resources, tips, and tricks on how to live and thrive with P/P. They help patients know that they’re not alone.
Introducing Toby, a pemphigus patient . . .
Toby became a Healing Hero determined to pay it forward so other patients don’t have to feel alone. Don’t miss her compelling story.
“I could not have gone it alone, and I want others to experience the same comfort and support I received. Help me pay it forward and fund the future by becoming a Healing Hero.”
Monthly Sustaining Gift Options
IMPROVE PATIENT ACCESS TO CARE ($15) Your monthly gift of $15 allows us to screen and add a new medical professional to our Find a Doctor map, increasing patients’ access to care.
HELP THE NEWLY DIAGNOSED ($30) Your monthly gift of $30 allows our Peer Coaches to support 75 members of our community by providing them with resources, tips, and tricks on how to live and thrive with pemphigus and pemphigoid.
ACCELERATE DIAGNOSIS TIMES ($75) Your monthly gift of $75 raises disease awareness by educating 75 medical professionals through our Biopsies Save Lives campaign.
FUND ESSENTIAL RESEARCH ($100) Your monthly gift of $100 helps us conduct the ongoing Natural History Study to better understand pemphigus and pemphigoid.
Become a Healing Hero
By becoming a Healing Hero, you provide for the greater good of our community by sharing our vision:
Healing Heroes are the heart of our community. They go above and beyond to support the IPPF community by making sustaining, monthly gifts to support our mission of improving the quality of life for all those affected by pemphigus and pemphigoid. Join Sally and become a Healing Hero today.
Make better patient “access to care” a reality.
Become a Healing Hero.
And start making a difference today.
Because pemphigus and pemphigoid are so rare, it can be difficult for patients to find doctors with experience in treating these diseases. Sally, a mucous membrane pemphigoid (MMP) patient, became a Healing Hero in 2017, shortly after being diagnosed. Her local doctors were unfamiliar with the disease, but luckily, she was able to find a local specialist through the IPPF’s Find a Doctor map.
“Without the IPPF, I don’t know what I would have done. But I do know that my treatment would have been tragically delayed. I highly encourage you to become a Healing Hero and pay it forward so that the IPPF is there for us as well as for those with pemphigus and pemphigoid around the world.”
A monthly gift of $15 or more would make a tremendous difference, help patients like Sally, and allow us to screen and add new medical professionals to our Find a Doctor map, increasing patients’ access to care.
IMPROVE PATIENT ACCESS TO CARE ($15) Your monthly gift of $15 allows us to screen and add a new medical professional to our Find a Doctor map, increasing patients’ access to care.
HELP THE NEWLY DIAGNOSED ($30) Your monthly gift of $30 allows our Peer Coaches to support 75 members of our community by providing them with resources, tips, and tricks on how to live and thrive with pemphigus and pemphigoid.
ACCELERATE DIAGNOSIS TIMES ($75) Your monthly gift of $75 raises disease awareness by educating 75 medical professionals through our Biopsies Save Lives campaign.
FUND ESSENTIAL RESEARCH ($100) Your monthly gift of $100 helps us conduct the ongoing Natural History Study to better understand pemphigus and pemphigoid.
Become a Healing Hero
By becoming a Healing Hero, you provide for the greater good of our community by sharing our vision:
Healing Heroes are the heart of our community. They go above and beyond to support the IPPF community by making sustaining, monthly gifts to support our mission of improving the quality of life for all those affected by pemphigus and pemphigoid. Join Dr. Donna Culton (University of North Carolina at Chapel Hill) and become a Healing Hero today.
“I became a Healing Hero because I wanted to give back to the IPPF… Please join me in paying it forward by becoming a Healing Hero today.”
Monthly gifts allow us to not only sustain current programs, but also expand our key areas of operation: patient support, education, awareness, research, and advocacy.
IMPROVE PATIENT ACCESS TO CARE ($15) Your monthly gift of $15 allows us to screen and add a new medical professional to our Find a Doctor map, increasing patients’ access to care.
HELP THE NEWLY DIAGNOSED ($30) Your monthly gift of $30 allows our Peer Coaches to support 75 members of our community by providing them with resources, tips, and tricks on how to live and thrive with pemphigus and pemphigoid.
ACCELERATE DIAGNOSIS TIMES ($75) Your monthly gift of $75 raises disease awareness by educating 75 medical professionals through our Biopsies Save Lives campaign.
FUND ESSENTIAL RESEARCH ($100) Your monthly gift of $100 helps us conduct the ongoing Natural History Study to better understand pemphigus and pemphigoid.
Become a Healing Hero
By becoming a Healing Hero, you provide for the greater good of our community by sharing our vision:
by Carolyn Fota As many in our community know, 2021 was a very successful year for the IPPF. From record attendance at our Virtual Patient Education Conference to creating connections for researchers at our Scientific Symposium, we found continued opportunities to grow the impact of our organization. Years of awareness efforts culminated in offering a continuing education course with the American Dental Association. Our peer health coaches adapted to the ongoing pandemic and provided additional support to patients and caregivers. These are just a few highlights from a year with many to choose from.
What you may not know is that Kevin Mead, the IPPF’s Executive Director, stepped down at the end of 2021 to pursue other opportunities. Though Kevin’s time with the IPPF lasted only 15 months, his impact was immediate. Kevin successfully applied for and received several high-profile grants, streamlined operations, and managed a virtual staff and team of volunteers with a deft hand.
Upon Kevin’s departure, the IPPF Board of Directors evaluated the needs of the Foundation to determine how to best move forward in the coming years. The Board conducted an exhaustive search and selected a staff member who shows a deep understanding of the IPPF’s vision, mission, and a commitment to the needs of our community.
I am pleased to announce Patrick Dunn as our newest Executive Director. Patrick has been working for the IPPF since 2014 when he joined the staff as a health communications specialist. His role grew over the years, and he has most recently worked as the IPPF Communications and Marketing Director. “It’s a tremendous honor to serve pemphigus and pemphigoid patients and their caregivers, as well as the medical professionals who support them every day,” Patrick said. “I’m excited to work in this new capacity, especially knowing the talent that the rest of our staff brings to their jobs. The IPPF has never been stronger, and there are many initiatives in the works to make a brighter future for patients.”
Patrick Dunn will officially assume his new role as the IPPF Executive Director on February 28, 2022. We are all looking forward to this next chapter. Patrick can be reached directly by email or phone (916) 435-6751.
Carolyn Fota is the Chair of the IPPF Board of Director’s, IPPF peer health coach, and Mid-Atlantic Support Group Leader.
We are happy to report that the IPPF had another great year in 2021. The infographic below highlights key areas in which we continue to work for all people affected by pemphigus and pemphigoid.
Despite the ongoing challenges of a global pandemic, we are optimistic about the future as we grow our efforts in patient support, awareness, advocacy, and research. Thank you to everyone in our community for your support. Together, we can expand hope for all people affected by P/P. We’re looking forward to 2022!
The IPPF Board of Directors and staff are excited to welcome three new board members: Carolyn Fota, Laurence Gallu, and Michael Rigas.
Carolyn Fota
Carolyn Fota was a newly retired Lieutenant Colonel, United States Army, Medical Service, in October 2015 who was finally going to enjoy time with family after a simple surgical procedure at Walter Reed National Military Medical Center, Maryland. However, within 24 hours of the procedure, hives and then blisters broke out across her body. It was the beginning of a nightmare that no one ever expected.
By December, a small army of medical staff at Stafford Hospital, Virginia; Fort Belvoir Community Hospital, Virginia; Walter Reed National Medical Center, Maryland; and the Mayo Clinic, New York, were collaborating on Carolyn’s intense medical support.
Finally, in February 2016, she was diagnosed with bullous pemphigoid. Treatment consisted of oral and topical steroids, tetracycline, nicotinamide, probiotics, Benadryl, magic mouthwash, and vitamin D3. Topical steroids were applied to her legs and arms, which were then wrapped in sterile dressings. She underwent intensive wound care for the next six months.
Carolyn is active in the IPPF community through peer health coaching, Mid-Atlantic Support Group leadership, advocating on Capitol Hill to our nation’s leaders, and participating in various IPPF projects whenever asked. She resides in Stafford, Virginia, with her husband of over 27 years, Francis. Carolyn enjoys golf, walking, church activities, and writing.
Laurence Gallu
Laurence Gallureturned to her native France after living in New York City for 30 years. She currently lives in Paris with her husband. She taught French language and literature at Smith College, NYU, and at Professional Children’s School in NYC. In Paris, she worked for the Columbia University’s Paris annex as coordinator of studies, acting as liaison between the French university system and US professors and undergrads. She retired after 12 years in 2016.
Laurence was diagnosed with pemphigus vulgaris in 2015. She was offered the opportunity to enter in a clinical trial called Pemphix that evaluated rituximab versus CellCept.
The treatment was a success, and she has been blister free ever since. Her doctor told her about the autoimmune blistering disorder (AIBD) French patient organization, the Association Pemphigus Pemphigoïde France (APPF). Benefitting from the APPF’s support and advocacy, she wanted to help provide these invaluable services to others. She began using her knowledge of English to translate documents and brochures, and was soon going to English speaking congresses, meeting with other AIBD patient organizations, and acting as a liaison with AIBD patient organizations in other countries.
Her involvement with the IPPF started when Marc Yale invited her to a conference in Lübeck, Germany, in 2017. When the IADPO-Global Skin (Rare Derm, and Global Skin Europe) and the European Reference Networks (ERNs) were created that same year, she became the APPF representative. In the ERN SKIN network, she has been the European Patient Advocacy Group (e-PAG) representative for her AIBD’s group since 2018.
Laurence has been closely linked to the IPPF especially since the last non-virtual IADPO-Global Skin conference (in Milan) where she met with Marc and patient advocates from PemFriends (UK) and the ANPPI (Italy) after discussing the creation of a consortium of AIBD organizations. When the time difference allows, she attends IPPF Patient Education Series webinars, which are always clear and informative.
Michael Rigas
Dr. Michael Rigas is the Chief Clinical Officer emeritis, co-founder, and principal in KabaFusion, an infusion therapy company started in 2010 that is dedicated to managing IVIG, and other chronic and acute therapies nationwide. Before this, in 2008 he joined Geisinger Health System as its Associate Chief Innovation Officer for Pharmaceutical Care and Chief Clinical Officer for VITALine CareSite Pharmacy Services. Over the last 20 years, Dr. Rigas has managed or overseen the care of over 15,000 patients who have received over 20,000,000 grams of IVIG.
Before moving to Geisinger, Dr. Rigas served as the Senior Vice President of Clinical Affairs at Crescent HealthCare in Anaheim, California, a large alternate site pharmacy company specializing in infusion and specialty pharmacy therapies.
Before this, Dr. Rigas was the Chief Clinical Pharmacist at three hospitals over a 10-year period. He graduated from the USC School of Pharmacy with his Pharm.D. Degree and completed his residency at UC San Francisco Hospitals and Clinics in 1982. He spent the first 10 years of his career in the hospital arena serving as the chief clinical pharmacist in three different, 200+ bed community hospitals. From 1998 to 2002, Dr. Rigas managed pharmacies and nursing operations for a nationwide infusion company with 32 pharmacies in 22 states at the vice president level.
Dr. Rigas’ areas of expertise includes antimicrobial therapy, immunoglobulin therapies, nutritional support, inotropic therapies, pain control, improving clinical and financial outcomes, and payer and contract relations. He is also active in the High-Cost Biologic/Specialty Pharmacy and infusion industries. He has worked on standardized coding for infusion billing, universal access via Patient Assistance Plans, and managing Medicare Part D issues in front of the California board of pharmacy and CMS regional managers. Dr. Rigas holds membership in the American Society of Hospital Pharmacists, the National Home Infusion Association, the American Academy of Neurology, and the Clinical Immunology Society.
Our “Inspiring Hope” series shares patient stories from around the world that show what it’s like to live—and thrive—with pemphigus and pemphigoid. This week’s story, Foundation of Hope, comes from Janet Segall, the founder of the IPPF.
I know many of you can relate to how it first felt being diagnosed with pemphigus or pemphigoid (P/P). After about a year of symptoms, I was diagnosed in 1983 and in a daze. I was in my mid-thirties and raising a child by myself. She was six years old.
Although it took about a year to get an official diagnosis, I got one pretty quickly once I had more than one or two lesions. Prior to receiving a diagnosis, I went to the dentist to get my teeth cleaned and mentioned to him that I had these body and mouth sores. He got a book from his shelf (no internet yet), opened the page to pemphigus vulgaris (PV), and read, “sores on the body, sores in the mouth—this could be pemphigus vulgaris.” As he read the description of the disease, I knew that was what I had. The last words he read were, “This is a fatal disease.” I walked out of his office with my head down, feeling numb; his staff looked at me like I was a corpse. My first thought was about who would take care of my daughter since she had lost her dad when she was a baby.
I wanted to find other patients. First, I called my doctor and asked if she had heard of a support group or foundation, and she told me there were none. I felt very alone. I thought a lot about starting my own organization right away, but I hadn’t reconciled the fact that I had this disease. Finally, after living with PV on and off for over 10 years, I decided to start a foundation.
The National Pemphigus Vulgaris Foundation was born in 1994 with help from one of the finest dermatologists in the country, Dr. Grant Anhalt, at Johns Hopkins University. He supported me throughout the entire process. The Foundation started as a support network for PV patients, but we later added pemphigus foliaceus and pemphigoid. When the Foundation became the International Pemphigus and Pemphigoid Foundation (IPPF), it was exciting. Traveling overseas to Israel, Italy, and London to start support groups was thrilling. Uniting people from across the globe in their quest for answers made me feel that I had done something good.
The Foundation’s main vision when it started in 1994 was to make sure that no one with P/P would ever feel alone like I did during those first years after I was diagnosed. I am in awe of the wonderful people who have worked so hard to make this organization into what I dreamed about. Thank you to everyone who is committed to this endeavor.
I am so grateful for experiencing the growth and success of the first 26 years of the IPPF. For the next 26 years, I hope for a cure for P/P and that more people will continue to care and help each other.
Janet Segall is the Founder of the IPPF and a PV patient since 1983. She is a peer health coach and works in Sacramento, CA in the mental health field.
Be a Healing Hero
Healing Heroes fund the future of the IPPF community by making sustaining, monthly gifts to support our mission of improving the quality of life for all those affected by pemphigus and pemphigoid.
By becoming a Healing Hero, you provide for the greater good of our community by sharing our vision:
NO DISEASE IS TOO RARE FOR A CURE!
Whether you’re a patient, caretaker, family, friend, medical professional, or rare disease advocate, your monthly gift allows us to not only sustain current programs, but also expand our key areas of operation: patient support, education, awareness, research, and advocacy.
It is with mixed emotions that I inform you that I am stepping down as the Executive Director of the IPPF. Over the past several months, the IPPF performed an intensive search for a new executive director to lead our community going forward. We were fortunate to find an experienced individual who is equipped to meet the unique challenges that our community faces. The IPPF is in good hands with Kevin Mead, who will be taking over as the Executive Director of the IPPF.
Although I am stepping down, I will continue to volunteer part-time with the IPPF and serve in the new role of Advocacy/Research Coordinator. I will continue to work to advance disease awareness, patient advocacy, and accelerate research and development for the IPPF community. After being diagnosed with MMP, I joined the IPPF in 2008 as a peer health coach. I have served, and will continue to serve, in that capacity as well.
Thank you for your unwavering support, and please join me in welcoming Kevin! I look forward to watching the IPPF continue to move forward in support of patients around the world, be a leading advocate for the rare disease community, and advance research toward finding a cure!
“I am delighted to join the Foundation. It is clear that the team of staff, Board of Directors, and volunteers have built a responsive and dynamic organization. I look forward to being a part of the next chapter for the IPPF and to “meeting” many of you at the upcoming Virtual Patient Education Conference.” –Kevin Mead
Kevin joins the IPPF from Spokane County United Way, where he was the VP of Resource Development. At United Way, Kevin developed fundraising and volunteerism initiatives. Before United Way, Kevin was the CEO of PrimeGlobal—a worldwide association of accounting firms— for 16 years. At PrimeGlobal, Kevin directed a remote staff of 16 on four continents organizing events, developing networking tools, and benchmarking member operations. He also merged three organizations into one and grew the organization 400%.
From 1994 to 2001, Kevin worked for the Institute of Internal Auditors (IIA). While at the IIA, Kevin held a number of positions, including Manager of Conferences, Manager of Field Services, and Manager of Certification Development.
Kevin has presented at seminars and conferences throughout Europe, North America, and Asia on topics that include association management, risk, and auditing. He holds a bachelor’s degree in economics and master’s degrees in audit and international association management. Kevin is a Certified Association Executive (CAE), a Certified Internal Auditor (CIA), and a Certified Information Systems Auditor (CISA).
In addition to his professional responsibilities, Kevin is a rugby referee and restores and rides old motorcycles.
The IPPF has maintained a “News and Information” section for many years. The launch of PemPress signals a new era in how we share information with our community. Our overarching goal is to increase public knowledge of the IPPF and our programs and services while providing P/P patients with information that improves their quality of life.
Our PemPress operational goals are to build and strengthen the IPPF brand by increasing visitors to our website; convert those visitors into donors, volunteers, ambassadors, and advocates; and increase the IPPF presence on social media channels. Each week, a new article will be posted in one of four categories: advocacy, awareness, education, or foundation. This monthly rotation will ensure we are keeping our community up to date on ways to help the IPPF and themselves.
Week 1: Foundation
Week 2: Patient Support
Week 3: Awareness
Week 4: Advocacy
Week 5 (if there is one): To be determined.
This is no small task and takes many people behind the scenes to research, write, and edit content. It would not be possible without the support of the IPPF staff and volunteer section editors. To provide even more informational, educational, and rich content, we have guest contributors who will focus on specific areas of interest to our community. These folks are with specialty pharmacies, P/P treating physicians, global P/P experts, our staff, volunteers, and patients, caregivers, and family members.
If you would like to be featured as a guest contributor, have a suggestion on PemPress, or a future story, contact the PemPress team at pempress@pemphigus.org.
