Rebecca Strong

You may be aware of the IPPF’s advocacy efforts. Now, we need you to advocate, too. Your story is important and shows that rare disease not only affects Americans, but Americans in your district. Your story proves to congressional members that their decisions have a great impact on human life and well-being. The IPPF encourages you to participate in bringing awareness of issues and legislation that affect the rare disease community to your state and federal representatives.

This may seem like a daunting process, but the IPPF is here to help. We have tools to support you as you prepare to speak with legislative members. One of the most important things to remember is that legislators are people, too. Look for common ground—they are parents, brothers, sisters, and friends. Statistically, they almost certainly know someone with a rare or autoimmune disease.

The following suggestions can help you to successfully become an advocate:

Contact the IPPF at advocacy@pemphigus.org to express interest in advocating at a local and/or national level. We can explain issues and legislation that the IPPF currently supports.
Identify your federal lawmakers by using the online tools at senate.gov (US Senate) and www.house.gov (US House of Representatives).
Monitor the congressional calendar. District work periods are the best time for lawmakers to meet with local constituents. Take advantage of the August recess. This is a busy time when many lawmakers hope to meet with their constituents to learn about issues affecting them and what they can do to help.
Schedule an appointment by sending a formal invitation to the lawmaker’s scheduler at least three to four weeks in advance of the proposed meeting date. Check your lawmaker’s website, as they may have a formal process for submitting meeting requests.

SAMPLE EMAIL TEMPLATE

Dear [Name],

I am writing to request a district meeting with (insert elected official here). As legislators increasingly play a role in shaping health care policy that impacts my access to quality and affordable care, I welcome the opportunity to discuss with you some of my challenges and opportunities patients face when caring for themselves.

I am available to meet with you on (suggest a few dates that work for you). If those dates do not work for you, I am happy to discuss other options with your staff. I can be reached at (insert phone number) or at (insert email).

Sincerely,

[Your Name]
[Your address]

About a week later follow up with a phone call.

PHONE CALL TALKING POINTS TEMPLATE

Hello, my name is [Your Name].

I’m a patient with pemphigus/pemphigoid in [Your City, State].

I’m following up on a written invitation I sent to [Name of Elected Official] wishing to speak with him/her to discuss issues facing patients like me when trying to obtain quality and affordable healthcare and prescriptions.

I would like to schedule an opportunity for [Name of Elected Official] to visit their office in the next three to four weeks. Do you have any availability?

(If they need time to check on the schedule, give them your name, email, and phone number. Be flexible. If they are unable to meet on the date(s) you suggested, discuss other options with them.)

Ask them if there is any required paperwork you need to submit prior to the meeting.

Thank you for your time, and I look forward to meeting [Name of Elected Official] at their district office.

THE VISIT:

Understand the issues you are about to discuss. This is your story and it is important to use your experiences as compelling evidence of the issues at hand.
Share your concerns with your elected official. If available, use the handouts that the IPPF provides on the policy or regulatory issue.
Get to the point. Don’t take too long to make your pitch. Tell them who you are, the community you represent, the number of patients with our disease, what your primary concerns are, and how and why these concerns are related to a certain piece of legislation or regulatory requirement.
- This should be conveyed in about 10 minutes.
- If they ask a question and you are unsure of the answer, please say so and let them know you will find out and get back to them. The IPPF is happy to help you find the information.
Double-check your facts and figures. Make sure that you are presenting accurate information.
Thank your elected official for specific votes and efforts where they have supported legislation that helps our community.
Take a photo with the elected official and their staff. Please share it with the IPPF. We love to post photos of our community participating in advocacy efforts.

Follow up by thanking your elected official for the visit.

THANK YOU NOTE TEMPLATE

Send by email or regular mail.

Dear [Name],

Thank you for taking the time to meet with me on [insert date].

As a constituent, I appreciate the opportunity to tell you about my disease and to share my story with you to see the impact healthcare policy has on patient access to care. It was an honor to meet you.

[Insert main points from the meeting as a way to reiterate your position.]

Please do not hesitate to contact me at [your phone or email address] if you have any further questions regarding [insert legislation or regulation name]. I welcome the opportunity to serve as a resource for you on these important issues.

Sincerely,

[Your Name]

Follow up with IPPF staff. Share any action items resulting from the meeting with the IPPF advocacy team by phone or email.

We hope this helpful guide encourages you to get you involved in advocating for our community and for those who cannot advocate for themselves. We are always looking for new ways to advocate for the IPPF community and would appreciate any feedback.

The 2018 IPPF Patient Education Conference was held in Durham, NC from October 12-14, 2018. Our 2018 hosts were Donna Culton, MD, dermatologist and Assistant Professor at the University of North Carolina (UNC), and Ricardo Padilla, DDS, Associate Professor and Director of Maxillofacial Pathology Graduate Program at UNC. Dr. Padilla and Dr. Culton set a high bar for this conference. Guests stayed at the “Mansion on the Hill” DoubleTree by Hilton, Raleigh-Durham Airport at Research Triangle Park. Upon arrival, attendees were greeted by white rocking chairs, porch swings, and a sense of belonging. The hotel provided a relaxing and intimate environment for conference activities. The conference was an amazing opportunity for patients and their support systems to not only have direct access to IPPF staff, but also some of the leading minds who treat pemphigus and pemphigoid.

The conference kicked off with a special “Dental Day” at UNC School of Dentistry. Attendees were welcomed by UNC staff and students at the Chapel Hill campus. Dr. Padilla welcomed everyone and introduced me as the morning’s first speaker. I shared my journey with pemphigus vulgaris (PV) and encouraged everyone to find their voice and strength after being diagnosed with pemphigus or pemphigoid (P/P).

UNC dental hygienists Jennifer Brame, Elizabeth Kornegay, and Jennifer Harmon then spoke about oral hygiene and how to use different products when patients have oral lesions. Next, Dr. Katherine Ciarocca (UNC) and Dr. Padilla discussed the oral side effects of treatments used in P/P. After lunch, attendees were given the opportunity to have an oral cancer screening and a one-on-one dental examination that included self-care techniques. The afternoon also included a discussion panel with me and Dr. Si Om Lim (UNC).

Upon returning to the conference hotel, attendees were invited to a welcome reception on the veranda. It was a perfect ending to the first day of the conference.

After breakfast and receiving their conference gift bags, attendees began day two of the conference with IPPF Executive Director Marc Yale’s welcome and a video from Senator G.K. Butterfield, 1st District, NC, Rare Disease Congressional Caucus Co-Chair.

The first presentation of the day was Kenny Metcalf, a PV patient from California. Kenny shared his emotional journey that led to his career as an Elton John tribute artist. Attendees then had the opportunity to see Kenny perform later that evening during the IPPF Awards Dinner. Kenny’s story highlighted the struggles that many of us have experienced with P/P.

This year, the conference featured separate learning tracks for pemphigus and pemphigoid. This allowed attendees to focus on the information that was most relevant to them. Sessions were specific to each disease and provided excellent information. The pemphigoid session was moderated by Marc Yale and Dr. Padilla. Dr. Janet Fairley (University of Iowa) gave a great introduction to the disease. Dr. William Huang (Wake Forest University) then discussed topical treatments used in pemphigoid before Dr. Russell Hall (Duke University) covered steroids and immunosuppressants.

The pemphigus session was moderated by Dr. Culton and began with an overview of pemphigus by Dr. Grant Anhalt (Johns Hopkins). Dr. David Woodley (University of Southern California) then discussed topical treatments used in pemphigus, and Dr. Adela Rambi Cardones (Duke University) discussed steroids and immunosuppressants.

After a short break, attendees were treated to disease-specific uses of Rituxan® and intravenous immunoglobulin (IVIG) therapy in pemphigus or pemphigoid. Dr. Ron Feldman (Emory University) and Dr. Huang led the discussion on pemphigoid, while Dr. Anhalt and Dr. Culton led the discussion on pemphigus.

On Saturday afternoon, Dr. Luis Diaz (UNC) shared 40 years of research in his keynote address, “Lessons from Endemic Pemphigus Foliaceus.” Dr. Diaz has been involved with the IPPF from its inception. Though primarily based at UNC, Chapel Hill, he has also conducted pemphigus research in Brazil for over 30 years. His research has included disclosing the immunopathological mechanisms operating in PV and pemphigus foliaceus (PF). Dr. Diaz is a true gem in our community.

After the keynote, there was an oral care discussion panel with Dr. Padilla, Dr. David Sirois (NYU), Dr. Nancy Burkhart (Texas A&M), and Dr. Joel Laudenbach (Carolinas Center for Oral Health). Attendees then attended lectures on the genetics of pemphigus and pemphigoid by Dr. Animesh Sinha (University of Buffalo) and “Future Trials of Targeted Therapies in Pemphigus” with Dr. Hall and Dr. Fairley.

Later, Dr. Culton introduced Jeff Weisgerber, a PV patient from North Carolina who has participated in two different clinical trials. Jeff shared his experience with the hope of breaking down barriers relieving potential fears patients might have about study participation. Marc Yale then discussed the IPPF Natural History Study and the importance of patient participation. Dr. Brittney Schultz (University of Minnesota) followed Jeff by discussing quality of life issues with P/P. Kate Frantz, IPPF Awareness Director, held an on-the-spot Awareness Ambassador training before Genentech representatives Jocelyn Ashford, Esther Newman, Kristine Amor Surla, and Kenia Carrillo Perez gave a great overview of Genentech Access Solutions and what they can offer to patients with P/P.

Following the day’s sessions, attendees had just enough time to change before the evening’s program. During the cocktail hour many hoots, howls, and laughs were had at the photo booth. The evening’s main event was the IPPF Awards Dinner, where individuals were recognized for their extraordinary service to the IPPF community. The highlight of the evening was Kenny Metcalf performing as Elton John. When Kenny entered the room, it was as if Elton John from the 1970s had arrived. He sat down at the piano and spoke to the crowd in a British accent, played the piano, and sang. The entire room couldn’t help but swing to the music and sing along. Many of those in attendance showed off their best moves on the dance floor. After a long day of learning, it was the perfect way for attendees to relax with new friends.

Marc Yale opened Sunday by introducing an extraordinary patient with PV, Porter Stevens. Porter shared his patient journey and how it propelled him to use social media to create his legacy and use it as a way to reach others with our diseases. Dr. Annette Czernik (Mt. Sinai Hospital, NY) and New York/Tri-State Support Group Leader Esther Nelson then shared an open discussion about the importance of being an informed patient and the doctor-patient relationship. The first morning session ended with a panel discussion led by IPPF Peer Health Coaches Mei Ling Moore, Rudy Soto, and Janet Segall.

After a quick break, attendees had the choice to attend a variety of workshops throughout the morning. These included “Infections in Pemphigus and Pemphigoid” with Dr. Cardones; “Ocular Disease” with Dr. Julie Skaggs (UNC Chapel Hill); “Drug Development” with Dr. David Rubenstein (UNC Chapel Hill); “Oral Care & Maintenance” with Dr. Nancy Burkhart; “Nutrition” with Kelly Calabrese (PV Patient, Optimal Wellness Solutions); “Women’s Health Issues with P/P” with Dr. Alexis Dieter (UNC Chapel Hill); “North Carolina Rare Disease Advisory Council” with Sharon King (North Carolina Rare Disease Advisory Council) and Tara J. Britt (Associate Chair, Rare Disease Advisory Institute, UNC School of Medicine); “Stress Management” with Mei Ling Moore (IPPF); “Mental Health Issues” with Lynne Mitchell (MES, MEd, RSW, Toronto, Canada); “Wound Care” with Dr. David Woodley; “Men’s Issues with Pemphigoid Disease” with Dr. Ron Feldman; and “Caregiving” with Janet Segall (IPPF).

After the morning sessions, Marc Yale gave his closing remarks.

As the conference ended, it was time to say goodbye to old and new friends. Many new support connections were made, and it truly is a blessing to be part of such an amazing event. The openness of doctors and healthcare providers really gave patients and caregivers access to some of the greatest minds studying these diseases. While we only had a brief time together, it felt like the relationships created will last a lifetime—there is something about talking with somebody “who just gets it.” We hope everyone that attended the conference carries the positive messages with them and knows that we’re all in this together.

Having a rare autoimmune disease is scary. Once you receive a diagnosis by a dermatologist experienced in treating pemphigus, it’s advisable to have all of your doctors communicate with your dermatologist (Internist, OB-GYN, Dentist, Orthopedist, and other specialists). Each healthcare provider must be aware of your complete health history and all medications that you take, including over-the-counter medications, vitamins, and supplements.

Because pemphigus is a skin-blistering disease, any invasive surgery may have repercussions. Accidents such as getting a paper cut, falling off of a bike, or tearing skin on the knee may also be problematic. Needing to have surgery when you have an autoimmune disease is even more of a challenge, especially if you need to have an implant. Open and clear communication is an extremely important aspect to healthcare in general, but it’s even more important in cases with pemphigus and pemphigoid (P/P). Any surgery involves risk and is a personal decision to proceed on a case-by-case basis. Even if you’ve been in remission for more than a year, it’s advisable to discuss any surgeries with your dermatologist so that all precautions can be taken in coordination with your surgeon. Once you’ve made the decision and arranged an operation date, it’s important to discuss all medications that you’re taking with your surgeon and anesthesiologist. Usually they’re aware, but it’s better to have the conversation.

Joe, a patient in remission, has shared his journey with me regarding pemphigus foliaceus and surgery.

In October 2004, I was diagnosed with pemphigus foliaceus. I was scared and worried about what would happen to me. I got through the shock and got on with my life as best as I could. I was put on 80 mg of prednisone and 4500 mg of CellCept^® a day. In May 2005, I had a heart attack and developed atrial fibrillation. We discussed getting a pacemaker with the doctor, but were concerned about putting something artificial in my body when my immune system was so compromised. Instead, I had an ablation.

In 2009, I was referred to Dr. Victoria Werth at the University of Pennsylvania by my local dermatologist. She prescribed my first round of rituxan. I was finally able to taper off both the prednisone and CellCept^®. I was in remission until 2011, when I underwent another round of rituxan. Other than the occasional sore in my mouth, I did well. I did have a tiny bit of activity on my skin, but clobetasol kept it in check.

In 2014 both my knees needed to be replaced due to the stress of normal living and physical work. I had my left knee replaced in January 2015, and the recovery went well. In January 2016, I had the right knee replaced. Within three or four days of my surgery I started getting small blisters around the incision site. For awhile I tried to keep it under control with the clobetasol. When I realized I was losing the battle, I called Dr. Werth’s office for an appointment. They got me in within a week. Dr. Werth was surprised that I had been in remission almost five years, since the second set of rituxan infusions. She immediately put me on 40 mg of prednisone and sent a referral to Dr. Donald Tsai at the Abramson Cancer Center at Penn to arrange for a round of rituxan. The following week, I met with Dr. Tsai, and less than a week later, I had my first infusion. I gradually decreased the prednisone, and I am again in remission. I would say to anyone who needs a joint replacement to go ahead and do it, but always consult with your doctor and dermatologist. Thank you for reading my story, and good luck to you all.

The IPPF thanks Joe for sharing his experience. We hope that if you have to decide whether to have surgery in the future that you will take the precautionary steps. It’s important to ensure that the level of activity with your antibodies doesn’t become jeopardized, or if you’re in remission at the time, that there are no repercussions.

On Saturday, February 4th, the Mid-Atlantic Support Group held its first meeting in Stafford, VA, with 10 new members attending. This meeting was supported by Vicky Starr and Diplomat Pharmacy.

Carolyn Fota approached the IPPF last fall about starting a support group in her area. Her reason for wanting to start a support group was simple. “I feel so much was given to me through the IPPF — it’s the least that I can do. This illness that we share, although serious, doesn’t have to be so isolating, scary and painful especially with a wonderful organization like the IPPF.”

Carolyn and Kevin Kruetner, a patient from her area, were the driving forces behind this meeting. They worked together with the IPPF to make sure this meeting would be a success and a way for them and other Washington, DC, area patients to come together to provide mutual support.

The IPPF is a great organization with highly trained and wonderful people who can help you and your family.

The group started their meeting over a lunch of pizza and pasta. Afterward, Vicky Starr, RN, from Diplomat gave an overview of the various medications, therapies, and treatment options used in treating PV, MMP, and BP. She also provided an update on insurance by state and where the (national) legislation was going as far as the rare disease community is concerned.

She also provided attendees with advice on being good self-advocates, strengthening communication skills, managing stress, and developing good relationships with care communities (dermatologists, internists, medical doctors, dentists, periodontics, IVIG care team, etc.).

She stressed the importance of being involved with the IPPF: “The IPPF is a great organization with highly trained and wonderful people who can help you and your family.” She highly recommended being involved with a support group and attending the yearly conference.

Vicky also took individual questions and spent time with participants who were relatively new to PV/MMP and BP. She did a great job making all feel at ease. No question was too small.

Attendee Mimi Levich agrees that this support group got off to a great start. “It was nice to meet everyone and share our stories and advice. Listening to Vicki Starr was especially exciting. She had some great suggestions and talked to us as equals, which is a rare for a medical professional.”

The IPPF thanks Carolyn Fota and Kevin Kruetner for bringing this support group to life. The duo has already started to plan their next meeting. Please keep an eye on the IPPF events page for more support group meetings around the country.

The first Rare Disease Day was first launched in Europe by EURORDIS, The Voice of Rare Disease Patients in Europe, and its Council of National Alliances in 2008. The USA joined the cause in 2009. By 2016, Rare Disease Day has become a worldwide event with over 80 countries participating.

Rare Disease Day is a pretty cool thing for those of us with rare diseases. According to the National Organization for Rare Disorders (NORD):

“Rare diseases are not so rare: there are 7,000 rare diseases & disorders that combined affect 30 million Americans–1 in 10 of us–and more than half are children.

People with rare diseases have tremendous unmet needs, including misdiagnosis, a long time to finally receive a correct diagnosis, and when they do, 95% have no treatment with ZERO CURES.

Rare Disease Day takes place on the last day of February each year. The main objective is to raise awareness with the general public and decision-makers about rare diseases and their impact on patients’ lives.”

This year’s global theme is research. It is our chance to give lawmakers, industry leaders, researchers, and healthcare professionals a glimpse of the impact a rare disease and its treatments may have. It is a local, national, and international awareness event.

Rare Disease Day is a day of unity for us patients. I can’t speak for you, but I felt very alone and isolated when I found out I had pemphigus vulgaris. Then I found community in the IPPF. It was very comforting to know there were others out there who had gone through what I was living through. Now imagine being with hundreds of others who have a variety of rare diseases. Like us, they are patients looking not only for effective treatments, but also cures. On Rare Disease Day, we are a united front advocating for increased funding for research. It’s a time of inclusion. A time for uniting as one. A time to make a difference.

It’s also a time to network with other patients and learn about their diseases, how those diseases affect them, and what their disease organizations do to support their needs. It’s a way to find out what we – as members of the IPPF – can do better to help and support all who are affected by rare diseases. It is a time to find community and strength in knowing that we are not alone in a search for better treatments and cures.

Rare Disease Day is a day to find strength and power in your weakness, your disease. You have the power to share your story. Your story has the power to impact the leaders of your city, state, and country. Your story can evoke changes in law, government, healthcare, and medical education.

I encourage you to look for opportunities where you can get involved. If no opportunity exists near you, you can create your own. You could share your story with co-workers or local government officials, organize a bake-sale and donate the proceeds to the IPPF, or organize a run/walk to raise awareness. The list of possibilities is endless. Just be sure to explain what pemphigus and pemphigoid are and refer people to the IPPF if they have questions.

To learn more about Rare Disease Day and Rare Disease Week events, visit http://www.rarediseaseday.org/ and http://rarediseaseday.us/.

Wow! The 2016 Patient Conference has already come and gone. It was an amazing experience for attendees and presenters alike. This year’s event focused on the importance of peer support and expert research, and there was a special emphasis on oral care. The conference was full of learning, laughs, and the formation of life-changing bonds.

The Hilton Garden Inn Downtown Austin is located close to some of the best food and entertainment in the city. Austin’s 6th Street has been a famous entertainment hub since the 1970s. It’s home to South By Southwest — Austin’s famous music and film festival — as well as the Pecan Street Festival, which attendees got to catch a bit of after the conference. The street itself is closed to vehicle traffic on Friday and Saturday nights and becomes a pedestrian paradise filled with lights, music, and bustling people.

Terry Rees, DDS, MSD, Director of the Stomatology Center at Texas A&M University College of Dentistry, and I started the conference by giving a joint continuing education presentation to local dentists and patient attendees on pemphigus and pemphigoid (P/P) and the reason why early diagnosis is so important. Dr. Rees covered the academic content of managing patient care, while I gave a personal testimony of my journey to obtain a diagnosis. Together, we presented the whole picture of diagnosing, treating, and living with an autoimmune blistering disease.

Thursday night’s Cocktail Hour, Awards Dinner, and Casino Night were all held at Eighteenth Over Austin — a beautiful venue with 180 degree views of the city skyline. Aimee Payne, MD, PhD, Associate Director of the Medical Scientist Training Program at the University of Pennsylvania, gave the keynote speech. This included an exciting glimpse into the potential breakthroughs of her current research. The IPPF Awards Dinner recognized many people who have worked hard, both in front of and behind the scenes, at the Foundation.

At Casino Night, patients, doctors, and researchers alike tried their hand at games of skill and luck to see who could gather the most chips by the end of the night. Marc Yale, IPPF Executive Director, served as MC, calling out the numbers of winning raffle tickets. Prizes included a Samsung Galaxy Tablet, FitBits®, Sonicare™ electric toothbrushes, Waterpik® flossers, and more!

Friday began with opening remarks from Dr. Rees and Marc Yale. Todd Kuh, IPPF Board Chairman, introduced the Board of Directors and staff.

Sergei Grando, MD, PhD, and a leading P/P expert from UC Irvine, gave a lecture on IVIG. Next, Victoria Werth, MD, Professor of Dermatology and Medicine at the University of Pennsylvania, and Member of the IPPF’s Medical Advisory Board, spoke of the treatments that are commonly used to treat our diseases. She covered why steroids and immunosuppressants work to treat P/P, as well as how they work. Dr. Werth also covered many of the side effects and complications that come with using such strong medications.

Kim Yancey, MD, Professor and Chair of the Department of Dermatology at the University of Texas Southwestern Medical Center in Dallas, covered the use of topical treatments in the care of patients with ocular, nasal, and oral disease involvement. He stressed the importance of regular checkups with eye doctors, dentists, and ENT doctors, as well as the role of dermatologists in managing lesions.

These lectures were followed by a Q&A session where patients and caregivers were given the chance to ask questions that were not answered in the lectures. Sessions like these give patients power over their diseases because they give them a chance to have an active dialog with experts.

After a short break, Animesh Sinha, MD, PhD, professor and dermatologist at SUNY Buffalo, gave a lecture on genetics. He explained certain genetic characteristics that most P/P patients share with one another and how blood samples collected at the IPPF’s Patient Conferences over the years have helped him in his research.

Dr. Rees participated in an oral care panel with Nancy Burkhart, RDH, EdD, adjunct associate professor at Texas A&M College of Dentistry and member of the IPPF Dental Advisory Council; Paul Edwards, MSc, DDS, FRCD(C), professor at Indiana University and member of the IPPF Awareness Committee and Dental Advisory Council; and Michaell Huber, DDS, professor at the University of Texas HSC San Antonio. This panel gave the patients a chance to ask questions that would help them improve their overall oral health. Topics covered included mouth rinses, brushing techniques, and the best kinds of toothbrushes for P/P patients.

After lunch, participants had the opportunity to choose from different breakout sessions.

The first group of sessions included topics as diverse as “below the belt” with A. Razzaque Ahmed, MD; clinical trials with Diana Chen, MD, MBA, FAAD; disease-specific patient reported outcomes with Badri Rengarajan, MD; and ophthalmology with Dennis Kay, MD.

The next group included a sessions on insurance from BioFusion’s Dinesh Patel, IVIG from Dr. Ahmed, oral care from Dr. Rees and Dr. Burkhart, and Rituximab and next generation therapies from Dr. Payne.

The final breakout sessions featured Dr. Payne’s lecture, “Future Targeted Therapy of Pemphigus,” as well as ”Mindfulness Based & Positive Psychology with P/P” by Terry Wolinsky-McDonald, PhD; Dr. Ahmed’s “Pemphigoid Q&A”; and Dr. Sinha’s “Pemphigus Q&A.”

The day ended with Dr. Kay, Dr. Ahmed, Dr. Sinha, and Dr. Payne sitting for a Q&A session, followed by cocktails and cupcakes. Many attendees then made their way out to explore the best that downtown Austin had to offer.

Saturday was a day for patients by patients. The morning started with breakfast and another opportunity to bond with fellow patients. Camaraderie is so important with P/P. Our diseases can be isolating, and it was awesome to meet others who have walked the same path, many of whom are well on their way to remission.

Mei Ling Moore started the morning sessions with a guided meditation and de-stressing presentation, helping us all to be open to the day ahead.

Next, Valhalla Holeman led us through the emotional story of her son Laten’s struggle with pemphigus foliaceus. There were not many dry eyes during the presentation. Laten’s quiet strength — along with the support of his sister and brother, Myles and Coale, sitting next to him — was truly inspirational.

IPPF Peer Health Coaches Mei Ling Moore and Janet Segall, IPPF Board Member Dave Baron, and I led a patient-to-patient panel. There were so many good questions and comments, and it really seemed to bond our community more tightly together once again.

Roy Vongtama, MD, reinforced the mind-body connection in his lecture. He explained how we might not have control over the stressors in our lives, but we do have control over how they affect us. Dr. Vongtama then showed how posture, breathing, and meditation affect overall health.

IPPF Awareness Ambassador Coordinator Bryon Scott discussed the Awareness Ambassador program and simple ways we can all spread awareness in our networks and with our own dentist. Anyone interested in getting involved should email
ambassadors@pemphigus.org.

Marc Yale then spoke of the work he is doing to advocate at the state and federal level. Marc is a true gem to the foundation. He has lobbied for Rare Disease Day in California and has stormed Capitol Hill with the National Organization on Rare Disorders and the American Academy of Dermatology. Marc broke down barriers and empowered everybody in the room. He made us aware that we, as patients, have the power to change laws in this country. It was truly inspiring.

Todd Kuh then gave a lecture on his “Chasing Down Pemphigus” fundraiser. Todd shared the story of how he felt after being diagnosed with PV and how a single conversation inspired him to regain the active lifestyle he led before his diagnosis.

After Todd, it was my turn to present “The Power of You.” There was a time when I felt I had lost my voice to PV, the treatments, and the side-effects of the medication. But somebody told me that patients are the true experts because we live with the disease. That inspired me to find my voice again, and my presentation focused on the ways we can all be advocates and share our expertise.

After the final presentations, Dr. Rees and Marc gave their closing remarks and hopes for all P/P patients. Everybody was touched. After two days of intensive and inspiring lectures, attendees left feeling united. It felt like we mattered. Doctors cared about the plights of patients like us. Patients felt like they had renewed hope. Some reinforced old friendships from past conferences, while others forged new relationships. I’m looking forward to what the IPPF has to offer in 2017!

Hello all! Working for the IPPF has been something I have been interested in doing for about five years, since my pemphigus vulgaris finally got under control. I knew from my first contact with the Foundation that this is an amazing group of people. I am proud of the way our community pulls together and rallies for each other; it’s amazing how we sincerely care about one another.

The position of Outreach Manager is new to me, as well as to the IPPF. This position was created to be a link between Patient Support and the Awareness Campaign. While these programs have different focuses, they are united by the common goals of education, early diagnosis, and promoting the best treatments for P/P patients.

As a result, half of my time will be spent supporting patients. If anybody touched by our diseases has a question, comment, or concern, I am their first point of contact. It is my responsibility to provide all who contact me with clear, precise information and resources. I will also be creating and revising material for print and online, as well as helping to facilitate local support groups, meetings, and patient education calls.

The other half of my job will be spent raising awareness of P/P in the medical community with the goal of reducing patient suffering and diagnostic delays. Currently, the Awareness Campaign focuses on dental outreach. I will be coordinating patient presentations at universities and looking to recruit, train, and supervise other patient speakers and volunteers. I will also take over coordinating exhibit booths at conferences for dentists and medical professionals. It is my goal to pass along what I’ve learned and use my knowledge to make a difference in the lives of P/P patients. And the IPPF has given me this wonderful opportunity to do so.” It sounds like a lot of work — and it is — but I am up for the challenge! Because of my status as a PV patient and my past work in the healthcare field, I feel that I am qualified to work with both communities simultaneously. I promise to work tirelessly to promote quality of life for the members of our community, as well as in the dental, medical, and nursing communities.

I know I would not be where I am today if it weren’t for the IPPF community. So many of you provided me with support, compassion, and encouragement during one of the lowest periods of my life. I was young when I was diagnosed. I was scared and felt isolated. But my IPPF friends changed all of that. I want to do that for others. It is my goal to pass along what I’ve learned and use my knowledge to make a difference in the lives of P/P patients. And the IPPF has given me this wonderful opportunity to do so.

Please know you can contact me by email at becky@pemphigus.org or by phone at (916) 992-1298 x105. I will work to get you the answers you need. I am here for you.

As a Patient Educator for the IPPF, I have the fantastic opportunity to travel around the country to different dental schools and give lectures on my journey with pemphigus vulgaris (PV). It’s an empowering experience to have a hundred people listen to my story at once. But it’s also important that the audience relates to me. I’m a person, not just a patient. I have to be open and honest about my journey. The audience must relate to the pain, suffering, sense of humor, and all the ups and downs of having PV in order to form a powerful memory. But how does this happen? How do I find unique ways to raise awareness not only in the classroom, but also on the trip to and from the university?

Appearance matters – We’ve all heard our mothers tell us to put on clean underwear before leaving the house, right? This is no different. Looking tidy helps provide credibility. It also helps you to look engaging. Plus, the more you enjoy life, the more others will want to be around you.
Don’t forget the Orange Sunglasses – The orange #healourskin sunglasses are a huge attention grabber. I wear mine EVERYWHERE! I keep them in the car, hang them from my collar, and wear them on top of my head. I wear them on vacation and around town. Many people have stopped me and asked, “What’s with the orange glasses?” It’s important to have a brief, but open answer to this question. Mine is, “You know the pink ribbons for breast cancer? Well, I have a rare autoimmune disease, and these are part of the campaign to raise awareness.” People usually follow up with, “What’s it called?” The conversation takes off from there. I also travel with a couple of extra pairs to give to people I meet along the way, and this leads to others inquiring about the glasses and PV.
HI! – It’s the single, most important thing an advocate can say. It’s the door that opens communication with another person, group, or audience. It’s not intimidating for the listener, and most everybody smiles when they say it. Don’t forget to make eye contact, too.
Be engaging – It’s important to not only talk, but also to listen. I don’t usually start off by talking about PV. Rather, I talk about the long line, the beautiful weather, or even a great piece of jewelry that somebody is wearing. Be aware of how people respond to you. While you may want to tell your life story, it can be overwhelming for some. Listen to their questions, and answer them honestly without over-sharing.
Be Brave – This tactic works the same in the grocery store or at the park as it does on an airplane or at a university. Tell somebody about the glasses and ask if you can take their picture to use as part of the Awareness Campaign. When I fly, I usually ask the flight attendants to take a picture with the glasses. I explain that I’m traveling to lecture at a university and the glasses are part of the Awareness Campaign. What’s the worst that will happen? They’ll say no. In that case, I’ll smile, thank them kindly, and take my seat. I’ll probably never see them again anyway. But if they say yes, it opens a whole dialog. Sometimes, they even ask the pilots if I can take their picture once we’ve landed. I ask the same thing of the professors who invite me into their class. The Profs know I’m part of the Awareness Campaign and are usually happy to oblige. Once one person does it, others inquire about what’s going on. Each inquiry is an opportunity to spread awareness.
Selfie-sticks – Ok, so maybe approaching others isn’t your thing. But I bet you’ve taken a selfie. Take your picture wearing the orange sunglasses while reading The Quarterly, petting the dog, holding a new baby, or with your best friend. Just don’t forget to post the pic with #healourskin!

There are opportunities to spread awareness everywhere. It just takes a moment to recognize and act on them.

There are also hundreds of other ways to be an advocate that I haven’t even thought of yet. That’s where you come in. Take my suggestions and run. I hope I’ve given you ideas of what you can do to help the IPPF spread the word. Put your unique spin on the Awareness Campaign. Please don’t forget to share your pictures – tag the IPPF and use the hash tag #healourskin. I can’t wait to see what you come up with!

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