Events

An interview between Dr. Brittney Schultz and Becky Strong, IPPF Outreach Director, was published by the Women’s Dermatological Society on June 27, 2022 and highlights the importance and value for physicians and patients in engagement with patient foundations. Becky Strong is a patient with pemphigus vulgaris. For Becky, her journey spanned 17 months, seven physician specialists, multiple encounters with her dentist, and several rounds of incorrect treatments and procedures before correctly being diagnosed with pemphigus vulgaris. She’s a registered nurse living in Michigan with her husband Tim and two children. Currently, Becky is the Outreach Director for the International Pemphigus & Pemphigoid Foundation (IPPF), a patient support organization. Becky is responsible for education and awareness related to medical and dental professionals, dental students, and patients at the IPPF. She also spends time advocating at the federal level for patients with rare diseases.

Brittney Schultz is a dermatologist at the University of Minnesota and cares for patients with autoimmune blistering diseases. She has been engaged in the International Pemphigus and Pemphigoid Foundation for several years. While in residency, she previously partnered with the IPPF and her faculty mentor Dr. Nicole Fett to study quality of life in patients with pemphigus. She was a speaker at the IPPF 2018 Annual Patient Conference and nominated for a Star Award for Patient Support. She frequently refers her patients to the IPPF and finds them invaluable in patient advocacy and research. 


Becky, tell us about your experiences in joining the International Pemphigus and Pemphigoid Foundation (IPPF).

I joined the IPPF as a patient looking for information and shared experiences with others with pemphigus vulgaris (PV). It was amazing to have the opportunity to talk to somebody else who “just gets it” without explanation. My first annual patient meeting was amazing and I learned so much from the doctors who presented at the meeting as well as real world tips and tricks from other patients.

That meeting was the first time that I had ever met anybody else with PV or a sister disease, pemphigoid, let alone somebody else who could pronounce it. I sincerely thought I would be walking into a movie-like portrayal of World War I field hospitals – with people sitting around in bandages and moaning. Instead, I found a room of vibrant, kind and sincere people who looked like me and had “pemphi-what” too.

More importantly, it was at this patient meeting that I realized what a dynamic organization the IPPF really was. IPPF Annual Patient Education Meetings bring doctors, researchers, scientists, and patients together to learn about current disease treatments, research in the disease space and pipeline medications all at a digestible and easy to understand way with a lot of networking between patients and experts. I realized that my doctor was part of a larger community of physicians who cared for and about patients like me – who were doing research to better understand pemphigus and who also wanted to find better treatments that worked faster. My doctor worked at a major university medical teaching institution that worked with many other doctors and researchers on pemphigus and pemphigoid. Toward the end of the first day of the conference, a doctor said that he was the expert in treating this disease but we, the patients, were the experts in living with these conditions. He went on to say that physicians could learn a lot from their patients about what they experience with this disease. I went home and took those words to heart. I offered to speak to the students and residents that were with my doctors and let them know that I would be willing to share my experience and let them ask questions that they wouldn’t normally ask. My oral medicine specialist took me up on this offer and within a few months, I had the opportunity to share my own story at the university’s School of Dentistry Grand Rounds.

I asked the IPPF for information on their support services to share with the dental school since my own doctors weren’t aware of the IPPF. In exchange, I wrote an article for the Quarterly – the journal of the IPPF. This article would change my life, and I became the first Patient Educator who shared my journey with other dental schools. Eventually, I was asked to become the IPPF Outreach Manager and work full-time to provide support and education to the IPPF community. Currently, I am the Outreach Director.

Read the full interview here.

KSL Beutner Laminin Blood Test

Highly accurate IIF serological assay for Laminin 332 Mucous Membrane Pemphigoid reduces the wait for confirmed diagnosis from months or years to 72 hours or less

On July 27, 2022 KSL Beutner Laboratories (Beutner), a global leader in immunologic testing for the diagnosis of bullous, vascular, connective tissue and inherited skin diseases, announced the launch of a first-to-market indirect immunofluorescence (IIF) serum blood test in the U.S. that positively identifies laminin 332, an antigen associated with the chronic, debilitating autoimmune disease mucous membrane pemphigoid (MMP).

Without a definitive interpretation, patients experience considerable pain and suffering due to misdiagnosis and treatment delays. Long sought after by oral pathologists, oral surgeons, periodontists and dentists, in addition to dermatologists, Beutner’s laminin 332-specific serological assay reduces the time to confirmed diagnosis from as much as two years to 72 hours or less. 

“The development and launch of Beutner’s much-anticipated serological assay for laminin 332 MMP builds on the pioneering work of Dr. Ernst Beutner, the father of immunodermatology,” said Dr. Lakshmanan Suresh, Technical Director at Beutner and Chief Medical Officer of KSL Diagnostics, Inc. (www.ksldx.com), which counts Beutner among its clinical laboratories. “The innovative methods he established for diagnosing autoimmune blistering diseases are used worldwide, and we are proud to continue his legacy.”

MMP is an autoimmune blistering disease characterized by multisite lesions on mucous membranes. Anti-laminin 332 MMP lesions often scar and can lead to serious complications depending on the mucosal surfaces affected. Oral mucosa — gums, inner lining of the cheeks and lips, palate and tongue — are involved in 80-90% of cases. Scarring of ocular mucosa, present in half of patients, may lead to blindness. The disease can also impact mucous membranes in the nose, throat, genitals and anus, causing severe, irreversible damage. Another complication in 25-30% of patients is increased risk of cancer malignancies, primarily adenocarcinoma in the gastrointestinal and genital mucosa and lungs. The condition can be fatal if left untreated. Considered a rare disease of unknown cause, MMP occurs mainly in people between ages 60 and 80 and, infrequently, in children. Women are affected twice as often as men.

“The first assay of its kind available in the U.S., Beutner’s IIF serum blood test verifying the presence of specific autoantibodies for laminin 332 MMP now enables clinicians to accurately identify this hard-to-diagnose disease much faster,” said Dr. Raminder Grover, Laboratory Director at Beutner. “This in turn allows for available therapies to be started much earlier to alleviate patients’ significant ongoing discomfort and spare them the long-term medical complications of this devastating disease.”

The most common autoantigens associated with MMP are BP180 and laminin 332. About one-third of patients are afflicted with the laminin 332 variant. Since 2002, blood tests to detect BP180 have been widely available, but a laminin 332 serum test has not been approved in the U.S. until now. Anti-laminin 332 MMP cannot be differentiated from other forms of the disease based on clinical examination. It can only be distinguished by a serological test for IgG antibodies of the variant. Because it mimics other diseases in the mouth, patients may suffer increasing pain and decreased quality of life for six months to two years before obtaining conclusive test results. Reaching a positive diagnosis as soon as possible is critical so that physicians can begin treatment.

Confirming laminin 332 MMP relies on several laboratory tests offered by Beutner: first, a direct immunofluorescence (DIF) microscopy of a skin biopsy to detect tissue-bound immunoreactants. Although DIF is the gold standard for investigating all forms of MMP, it does not always differentiate between variants. Next, indirect immunofluorescence is applied to identify circulating antibodies targeting the autoantigens in the basement membrane zone (BMZ) of the skin. This type of analysis is done in two parts – an IIF test on salt-split skin and an IIF serum test on transfected cells for laminin 332 IgG/IgG4 antibodies using a EUROIMMUN assay. Beutner’s IIF serological assay has a sensitivity of 84% and a specificity of 99%.

Beutner recently received approval from the New York State Department of Health to perform the laminin 332 IIF blood test for U.S. customers at its Buffalo, NY lab.

Dr. Ernst H. Beutner, a co-founder of Beutner Laboratories, pioneered the DIF test 40 years ago after he and his associates at the University at Buffalo (UB) discovered the role of autoimmunity in pemphigus and pemphigoid. Development of defined, quantified immunofluorescent methods now used worldwide for the investigation of autoimmune skin diseases began with studies at UB led by senior researchers from Beutner, UB and Harvard University.

KSL Beutner Laboratories provides anti-laminin 332 IIF serological testing as a service, as well as several other assays for laminin 332 MMP and for the BP180 variant of MMP. Tests can be ordered at https://www.beutnerlabs.com/.

Beutner Laboratories
International Alliance of Dermatology Patient Organizations

The following was published on May 25, 2022 in Practical Dermatology.

The Global Dermatology Coalition, a patient-led, multi-stakeholder group of organizations, has launched during the 75th World Health Assembly in Geneva. The Global Dermatology Coalition includes dermatology patient organizations, health care professionals (dermatologists and dermatology nurses), researchers, and industry. 

“Collaborative action is needed to change the difficult reality faced by skin patients and for this reason we have established the Global Dermatology Coalition. Together, our organizations are actively working to improve patient outcomes globally,” says Marc Yale, Board President of the International Alliance of Dermatology Patient Organizations (also knowns as GlobalSkin) and Chair of the Global Dermatology Coalition Steering Committee. “This would mean improved access to the diagnosis, care, treatments and support they need, when they need it – no matter where they live in the world. The Coalition speaks as one voice because people living with dermatological diseases, their caregivers and their families deserve to live without stigma, for their diseases not to be minimized and to achieve a higher quality of life.”

Diseases of the skin, mucosa, nails and/or hair are a leading cause of global disease burden (GDB), affecting nearly 900 million people in the world at any time and are the fourth most frequent cause of human illness globally. Dermatologists diagnose and treat more than 3,000 different diseases, including atopic eczema, psoriasis, vitiligo, albinism, acne, alopecia and thousands of rare skin diseases. Dermatological diseases cause substantial pain, disfigurement, disability, and stigma while they also lead to serious comorbidities and significant psychological, social and financial burdens for patients and their families. Theses diseases can be inflammatory, infectious and malignant, and are among the most prevalent and disabling disorders, particularly in low resource countries. 

Formed in 2022, the Global Dermatology Coalition will advocate to the World Health Organization and other decision makers globally to elevate the healthcare prioritization of dermatological diseases. 

Read the press release here.

Akari Therapeutics recently announced that positive results from the Phase II study of investigational nomacopan in bullous pemphigoid (BP) were published online in the Journal of the American Medical Association (JAMA). 

“These positive Phase II data advanced our understanding of the nomacopan safety profile and informed duration of treatment in the ARREST-BP Phase III clinical trial, which is open for enrollment now,” said Rachelle Jacques, President and CEO of Akari Therapeutics.

BP is the most common autoimmune blistering skin disease. It typically affects people over the age of 65. There are no approved therapies but superpotent topical steroids and high dose oral corticosteroids (OCS) are the current standard of care. The mortality rate in BP is ~three-fold higher than the general population due to the disease itself, and infections and cardiovascular conditions that are more common in older patients and are exacerbated by treatment with high dose OCS. There is significant unmet need for an effective steroid-sparing therapy.

Read the full press release here. 

Marc Yale

We’re excited to share that in November of 2021, the IPPF’s Marc Yale was named as President of the Board of Directors of GlobalSkin. Marc is the current IPPF Research and Advocacy Coordinator, and he was the IPPF Executive Director from 2016-2020.

Marc Yale was diagnosed in 2007 with cicatricial pemphigoid. Like others with a rare disease, he experienced delays in diagnosis and difficulty finding a knowledgeable physician.

Eventually, Marc lost the vision in his left eye. This inspired him to help others with the disease. In 2008, he joined the International Pemphigus & Pemphigoid Foundation (IPPF) as a peer health coach.

Since then, Marc has worked with people to improve their quality of life and encourages them to become self-advocates. In 2009, he helped develop the Pemphigus and Pemphigoid Comprehensive Disease Profile giving experts insight into the patient perspective. In 2016, he was asked by the IPPF leadership to become the executive director of the foundation.

Marc currently resides in Ventura, California with his wife Beth and daughter Hannah.

About GlobalSkin

The International Alliance of Dermatology Patient Organizations (IADPO)—also known as GlobalSkin—is a unique global alliance serving patient organizations to improve the lives of dermatology patients worldwide. Based in Canada, the nonprofit is focused on three pillars: research, advocacy, and support.

GlobalSkin envisions a world in which people living with dermatological diseases and skin traumas can easily access the care and treatment they need, when they need it, and can live without stigmatization, persecution or economic disadvantages due to their conditions.

GlobalSkin is working with 185 patient association members—located in 62 countries representing more than 50 disease areas—to improve the lives of those affected by dermatological conditions throughout the world by:

  • initiating dialogue and advocating for access to new and existing treatments, and dermatological care to improve patients’ quality of life;
  • raising the awareness of the incidence of, and the challenges for, people living with serious dermatological diseases to create better understanding; and
  • supporting members and not-for-profit dermatology patient organizations through education, global campaigning, sharing of best-practices and beneficial networking opportunities to strengthen support for patients and build a strong, inclusive movement;
  • building special focus communities; and
  • conducting patient-initiated research.

GlobalSkin appeals as one voice to the World Health Organization and other key influencers to recognize the debilitating nature of dermatological disease so that more resources for research and treatment options are made readily available to those afflicted and in need of help.

April 28, 2021 (GLOBE NEWSWIRE) — Akari Therapeutics, Plc, a biopharmaceutical company focused on innovative therapeutics to treat orphan autoimmune and inflammatory diseases where the complement and leukotriene systems are implicated, today announced that the FDA has granted Fast Track designation to nomacopan for the treatment of patients with moderate and severe bullous pemphigoid (BP). Nomacopan has also been granted orphan drug designation for nomacopan for the treatment of BP by the FDA and the European Medicines Agency (EMA).

Fast track is a process designed to facilitate the development and expedite the review of drugs to treat serious conditions and fill an unmet medical need. The purpose is to get important new drugs to the patient earlier. A drug that receives Fast Track designation benefits from more frequent communications and meetings with the FDA to review the drug’s development plan including the design of the proposed clinical trials, use of biomarkers and the extent of data needed for approval.

Success in BP could potentially open up a range of other severe dermatological conditions for treatment with nomacopan where C5 and LTB4 are implicated, including hidradenitis suppurativa, epidermolysis bullosa acquisita and mucous membrane pemphigoid.

Read the full press release here. 

On April 23, 2019, Akari Therapeutics, Plc (Nasdaq: AKTX), a biopharmaceutical company focused on innovative therapeutics to treat orphan autoimmune and inflammatory diseases where the complement and/or leukotriene systems are implicated, announced positive initial Phase II clinical data from the first three of bullous pemphigoid (BP) patients in an ongoing clinical trial.

Bullous pemphigoid is a severe orphan inflammatory skin disease currently treated primarily with steroids and immunosuppressants which bring with them well known side effects. Treatment response and steroid potency varies significantly based on the severity of the disease, although flares and relapses frequently occur.

In patients with bullous pemphigoid there is evidence that both terminal complement activation (C5) and the lipid mediator leukotriene B4 (LTB4) have a central role in driving the disease. Ex vivo data, from a recent study at Lubeck University, in BP patients showed a pronounced accumulation of LTB4 and C5 and its activation products in the inflamed skin of bullous pemphigoid disease patients.

The Phase II trial for up to nine mild-to-moderate bullous pemphigoid patients is a six-week open-label single-arm study evaluating safety and with the main efficacy measure the Bullous Pemphigoid Disease Area Index (BPDAI) a frequently used evaluation of the extent and severity of the disease.

Initial results from the first three patients showed that Nomacopan (Coversin), dosed daily subcutaneously, was well tolerated in three elderly patients (>65 years), and that there were no drug-related adverse events.

Read the full press release here. 

On March 2, 2019, Principia Biopharma Inc., a late-stage biopharmaceutical company dedicated to bringing transformative oral therapies to patients with significant unmet medical needs in immunology and oncology, today announced Phase 2 clinical data from the Believe-PV study for PRN1008 as part of the Late-breaking Research: Clinical Trials program at the American Academy of Dermatology (AAD) annual meeting in Washington D.C. PRN1008 is being developed for the potential treatment of pemphigus, including pemphigus vulgaris (PV) and pemphigus foliaceus (PF). Confirming interim clinical results previously reported, the Phase 2 study reached the primary efficacy measurement of control of disease activity (CDA) on low dose corticosteroids.

“The primary goal of treating patients with pemphigus is to control the disease and heal the skin, however a significant challenge is to avoid adverse events associated with the prolonged use of corticosteroids that are typically required to achieve clinical improvement,” stated Dr. Dedee Murrell, Professor and Head of the Department of Dermatology at The St. George Hospital Clinical School, University of New South Wales in Sydney, Australia and the lead principal investigator. “PRN1008 has the potential to rapidly and effectively treat patients’ disease, while significantly reducing the exposure to moderate to high corticosteroid doses.”

The open-label Phase 2 study enrolled 27 patients with newly diagnosed and relapsed, mild to severe pemphigus (including both PV and PF). Twenty-four patients were treated with oral PRN1008 and low dose corticosteroids (LDCS; <0.5mg/kg/day) for twelve weeks, with twelve weeks of follow-up. The primary endpoint was CDA (where new lesions cease to form, and existing lesions begin to heal) at Week 4. Other secondary endpoints included complete remission rates and reduction in anti-desmoglein autoantibody levels.

Read the full press release here. 

 

On February 22, 2019,  Principia Biopharma Inc., a late-stage biopharmaceutical company dedicated to bringing transformative oral therapies to patients with significant unmet medical needs in immunology and oncology, announced that an abstract has been accepted for oral presentation at the Late-Breaking Research during the 2019 American Academy of Dermatology annual meeting in Washington, D.C.

The abstract, “Final results of the Believe-PV proof of concept study of PRN1008 in pemphigus,” will be presented as part of the Late-Breaking Research: Clinical Trials on Saturday, March 2, 2019 at 2:10pm ET in Ballroom A of the Walter E. Washington Convention Center.

About Principia Biopharma
Principia is a late-stage biopharmaceutical company dedicated to bringing transformative oral therapies to patients with significant unmet medical needs in immunology and oncology. Principia’s proprietary Tailored Covalency® platform enables Principia to design and develop reversible and irreversible covalent, small molecule inhibitors with potencies and selectivities that have the potential to rival those of injectable biologics yet maintain the convenience of a pill. PRN1008, a reversible covalent BTK inhibitor, is being evaluated in a Phase 3 clinical trial in patients with pemphigus, an orphan autoimmune disease, and in a Phase 2 clinical trial in patients with immune thrombocytopenic purpura, a rare hematological disease. PRN2246, a covalent BTK inhibitor which crosses the blood-brain barrier, has completed a Phase 1 clinical trial in healthy volunteers, and has been partnered with Sanofi for development in multiple sclerosis and, potentially, for other diseases of the central nervous system. PRN1371, a covalent inhibitor of Fibroblast Growth Factor Receptor (FGFR) is being evaluated in a Phase 1 trial in patients with bladder cancer. For more information, please visit www.principiabio.com.

Read the full press release here.

Aimee S. Payne, MD, PhD, and Nicola J. Mason, BVetMed, PhD

Transformative Research Award Will Support Further Pemphigus Research

Nicola J. Mason, BVetMed, PhD, associate professor of Medicine and Pathobiology at the School of Veterinary Medicine at the University of Pennsylvania, and Aimee S. Payne, MD, PhD, the Albert M. Kligman Associate Professor of Dermatology at the Perelman School of Medicine at the University of Pennsylvania, have received the prestigious NIH Director’s Transformative Research Award. The award is part of the NIH Common Fund’s High-Risk, High-Reward Research program, which was established to accelerate the pace of biomedical discoveries by supporting exceptionally creative scientists with highly innovative research.

Autoimmunity occurs when the body’s immune system mistakenly attacks normal tissues, thereby causing diseases such as rheumatoid arthritis, systemic lupus, and type 1 diabetes. According to the Autoimmune Disease Research Center at John Hopkins, at least ten million Americans suffer from the more than eighty illnesses caused by autoimmunity. Under the grant, Mason and Payne are looking to evaluate a genetically engineered cell-based therapy approach to treat pet dogs with naturally occurring autoimmune skin disease known as pemphigus. Dogs are one of the few other species to develop pemphigus naturally and the condition mirrors pemphigus in human patients. Evaluation of this approach to treat pet dogs with this debilitating disease may ultimately lead to breakthrough therapies for humans.

“The successful treatment of autoimmunity in the family dog using this unique approach would not only be a breakthrough in veterinary medicine,” said Mason, “but could also change the way autoimmune disease is treated in humans. We believe that this work may facilitate the translation of cellular immunotherapies for a broad range of canine and human diseases, including autoimmunity, transplant rejection, infectious disease and cancer.”

Mason and Payne will continue to focus on their novel gene-engineered chimeric autoantibody receptor T cell (CAART) immunotherapy and its potential to cause lasting remission of antibody-mediated disease.

“Our study of CAART immunotherapy in companion dogs with naturally occurring autoimmune disease will be synergistic with our efforts to develop similar human therapies,” said Payne. “By comparing how these complex cellular immunotherapies work in dogs versus humans, we will better understand how to engineer and deliver these therapies to potentially cure disease.”

Mason, who earned her BVetMed from the University of London, and her PhD from the University of Pennsylvania, is a board-certified veterinary internist and immunologist. For the past ten years, she has been actively involved in evaluating the immunological responses of immune-based therapies in client-owned dogs suffering from lymphoma, osteosarcoma, and hemangiosarcoma. Mason’s research laboratory is currently developing CAR-T cell therapies for dogs with B cell lymphoma, and she serves as the PI and lead investigator on the first clinical trial evaluating CAR-T cell therapies in dogs.

Read the full press release at PennVet. 

Syntimmune recently announced positive preliminary results from its phase 1b proof-of-concept trial of SYNT001 in pemphigus vulgaris and foliaceus patients. It’s exciting for the IPPF to share good news related to research and treatments. The full press release from Syntimmune can be found here. The following is an excerpt:

Syntimmune, Inc., a clinical-stage biotechnology company developing antibody therapeutics targeting FcRn, today announced positive preliminary results from its Phase 1b proof-of-concept trial of SYNT001 in patients with pemphigus vulgaris and pemphigus foliaceus. The data showed clinically meaningful benefit of SYNT001, with a favorable safety and tolerability profile similar to that observed in the Phase 1a study.

“There remains a clear unmet need for a safe and fast-acting treatment for patients with pemphigus, who face serious symptoms and complications associated with their disease,” said Donna Culton, M.D., Ph.D., an assistant professor at the University of North Carolina School of Medicine. Culton presented preliminary results of the Phase 1b study at the International Investigative Dermatology conference being held on May 16-19, 2018 in Orlando, FL. “These preliminary data demonstrate safety as well as a rapid reduction in PDAI scores and lowering of IgG levels with treatment of SYNT001, which support further studies of this drug as a potential new therapeutic option,” Culton said.

Read Syntimmune’s press release, including additional information, here. 

In February 2017, the IPPF joined the Friends of the National Institute of Dental and Craniofacial Research (FNIDCR) Patient Advocacy Council (PAC). This group is made up of patient advocacy organizations whose patient members’ conditions and diseases include an oral component and have a stake in research supported by the NIDCR. The group is supported by the American Association for Dental Research (AADR).

The AADR and FNIDCR will hold an Advocacy Day on Capitol Hill on Tuesday, February 27. Members and patient advocates will meet with members of Congress and Hill staff to advocate for dental, oral, and craniofacial research. They will emphasize how important investments in biomedical research and oral health programs are in impacting the people in their home states and beyond.

The IPPF had the pleasure of interviewing Lindsey Horan, AADR’s Assistant Director of Government Affairs about their 2018 Advocacy Day and important legislative issues.

IPPF: What is your goal for your advocacy day? What do you hope to achieve?
Lindsey Horan (LH): Our overarching goal for Advocacy Day is to educate on and raise awareness for dental, oral, and craniofacial research with members of Congress and congressional staff.

As oral research advocates and stakeholders, we know that oral health is integral to overall health, but it’s critical to stress that to the policymakers who are weighing competing priorities and are responsible for divvying up federal funds across government agencies and programs. The Hill visits our members conduct on Advocacy Day have the opportunity to demonstrate the far-reaching nature of oral health research and, most importantly, to share their personal stories—whether it is the story of a patient whose life has been impacted by an oral disease or condition, or a researcher whose work is positively shaping the trajectory of dental and oral care we provide in this country.

IPPF: Which legislative issues are of priority for the AADR/FNIDCR this year? Why are they important?
LH: Our legislative priorities for AADR and the Friends of NIDCR will be consistent with the priorities from 2017, and they largely relate to securing the highest possible federal funding for oral research and oral health programs. While this certainly includes the National Institutes of Health and the National Institute of Dental and Craniofacial Research (NIDCR), we also champion agencies whose work touches oral research in some capacity, such as the Centers for Disease Control and Prevention and its National Center for Health Statistics and the Agency for Healthcare Research and Quality.

Heavily focusing our legislative portfolio on appropriations is reflective of the fiscal and political environment in which we’re operating. Congress has to make difficult decisions about how to tackle a mounting federal debt and deficit, and we want to ensure that shortsighted cuts aren’t made in the name of savings. In the absence of our community speaking out—loudly—about these federal agencies and programs, lawmakers will see a win-win scenario: being able to cut funding with little to no pushback.

IPPF: What can those who are unable to attend Advocacy Day in DC do to advocate locally?
LH: There is so much that can be done locally—even from home—to champion oral research throughout the year.

First, it’s important to remember that members of Congress are not in Washington, DC, year round. They regularly return home to meet with their constituents, and these visits are great opportunities for people to voice their priorities or concerns. Sign up for your elected officials’ email listservs to learn about upcoming town halls or other events where you might have an opportunity to speak with them. At the end of the day, constituents are the people members of Congress want to hear from most!

Additionally, don’t underestimate the power of social media. Virtually all Senators and Representatives are active on Twitter, Facebook, and other social media platforms—and they pay attention to them. While seemingly inconsequential, research has shown that it doesn’t take many Tweets on a given topic for staff to pay attention, especially if the Tweets come from constituents (and constituents should identify themselves as such in their Tweets).

IPPF: Do you have advocacy alerts or ways to stay updated throughout the year on important legislative issues?
LH: Absolutely. We want to make sure our community knows how developments at the federal level may impact our field and the research enterprise more broadly.

The first resource I would recommend is our Government Affairs & Science Policy Blog (http://ga.dentalresearchblog.org), which is regularly updated with advocacy and policy news. And to make it easy for readers, there is an option to subscribe to the blog, so new posts will come directly to your email. We also post information to our Twitter account (@DentalResearch). These are great places to learn about any new action alerts or opportunities for engagement.

There are also a number of opportunities available through AADR membership (http://www.iadr.org/AADR/Join-Renew/Join-Us) for those who want to further engage, such as the potential opportunity to serve on committees like our Government Affairs Committee and joining us on Capitol Hill for Advocacy Day.

IPPF: Is there anything else you’d like to share?
LH: I know people often shy away from advocacy for a variety of reasons—they worry about bringing politics into the workplace, they are put off by the term, or they don’t see the point. To this I would say:

  1. As an American citizen, you have a right to petition your government as outlined in the Constitution. It’s correct that many employers do have rules related to advocacy, but they do not prohibit you as an individual citizen from being able to advocate. To clarify what is and is not allowed, talk to the government or public affairs staff at your organization or institution.
  2. For those who don’t quite understand or are put off by the term “advocacy,” think of it as education. When you reach out to members of Congress, you are sharing your story, explaining your work, or demonstrating how a program is making a difference in your community. Members of Congress and congressional staff are grappling with information overload. Meeting with them provides an opportunity to share what you know so that they might better understand the issue and how it fits into their legislative priorities.
  3. Finally, advocacy does make a difference. While a phone call, a Tweet, or an email seem too small to be significant, they add up—and we have seen this demonstrated time and again. Just recently, a provision in the House’s first version of the tax bill calling to tax graduate students’ tuition waivers as income received so much pushback from the community that it was removed in the final legislation. Speaking up and speaking out matter!  

A huge thank you to Lindsey Horan for taking the time to answer our questions!

IPPF Awareness Ambassador Coordinator, Bryon Scott, will attend Advocacy Day on Capitol Hill this year. We look forward to updating you on his experience and the outcome of his advocacy.

What are Pemphigus and Pemphigoid
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