Name: Marc Yale
Title: Executive Director
Organization: International Pemphigus & Pemphigoid Foundation
Disease focus: Pemphigus and pemphigoid are a family of bullous skin diseases that are autoimmune in nature. They affect the skin, which is the largest organ in the body. It is autoimmune, so the body attacks itself and the antibodies attack proteins causing the skin to blister and separate. It can be very painful. These are two different diseases that affect different layers of the skin.
Headquarters: Sacramento, California
How did you become involved in rare disease: I’m a patient and was diagnosed in 2007 with mucous membrane pemphigoid. After being diagnosed, I began volunteering with the foundation. I discovered the IPPF through the internet and felt that I needed to help others with the disease learn more about the disease and maybe not have to experience what I went through. I got involved with the foundation in 2008 and began volunteering. After becoming disabled from the condition—I lost vision in my left eye—I joined the organization and launched the IPPF Peer Health Coach program and did that for about seven years. I worked in a lot of capacities—patient support, fundraising, event management, and many others. Then in 2016, the executive director position became available and I was installed as the executive director.
Previous career: I worked in the restaurant industry for about 20 years as a manager, chef, and owner.
Education: Associate’s degree in business management and accounting from Ventura College.
Organization’s mandate: Our mission is to improve the quality of life for all people who are affected by pemphigus and pemphigoid. We do that through providing programs and information that lead to early diagnosis and support for those individuals.
Organization’s strategy: Our strategy is to create awareness for patients and doctors worldwide with the information they need to help diagnose the disease. We want to help make sure patients live productive, active lives. We do that through a number of programs including a physician referral service, quarterly journal for physicians and patients, annual patient education conference to educate patients and physicians, and collaboration with pharmaceutical companies on treating the disease and developing clinical trials. The IPPF is very involved in advocacy, so we maintain relationships with congressional representatives to make sure there’s enough research funding and to work on favorable legislation for our patient community. We also collaborate with other organizations to promote full access to treatments.
Funding strategy: Our strategy is to work with major donors, individual donors, and our corporate sponsors to continue to grow the organization and our programs.
What’s changing at your organization in the next year: As we grow, the biggest opportunity is to continue to focus on clinical trials in drug development. We had our first introductory meeting with the FDA this year and that was extremely productive. We want to explore how we can be more involved in the drug development process while working with our pharmaceutical partners, educating our patients about the clinical trials, and collaborating on clinical trial development. We don’t have enough drugs approved for our condition and treatments are not accessible. Other than just having our first drug approved for pemphigus in the last 60 years, almost all of our treatments are used off-label. This makes access to these treatments very difficult for our patient community. That’s really a driving force for us—to bring access to more and better treatments.
Management philosophy: I have a hands-on management style. As a patient, I put the patient first. That’s first and foremost for our organization. My style is very collaborative style and make sure we are all working as a team. I make sure that I am providing guidance and insight while empowering my team to be creative.
Guiding principles for running an effective organization: Good communication is critical. Also, having a good plan from the outset and being organized contribute to effectiveness. Additionally, one’s leadership style is important to make sure your organization is running effectively. Having a good understanding of capacity will certainly allow the organization to be more effective.
Best way to keep your organization relevant: As a patient organization, remain focused on the patients. It’s important to do a thermometer read of your patient community. What do the patients want? What do the patients need? At the IPPF annual meeting last year we had a patient town hall meeting with all of the patients at the conference. We asked our community what are we doing right and how we could improve. We asked attendees what they believed our organization should be doing going forward. The feedback that we received was very enlightening and to hear from patients themselves helped us determine where the organization should go. I’ve found that our stakeholders, such as industry and the FDA, want to know the patient perspective. Most importantly, the IPPF must have our finger on what’s most important to our patient community.
Why people like working with you: I’m easy to get along with and a positive person. I have an easy and comfortable communication style and I’m clear and concise. I lay out what the expectations are and don’t like surprises. However, in this space you must remain flexible and open to rapid and sudden change.
Mentor: Coming from the for-profit world to the non-profit world was a little bit of a challenge for me and being a restauranteur was extremely stressful. I had many mentors over the years in the restaurant business—these individuals taught me how to direct, communicate, listen, manage, and build teams. This cumulative knowledge has helped me throughout my career.
On the Job
What inspires you: People and relationships inspire me. Hearing about the impact that the foundation has made on people’s lives really drives me. After receiving letters from patients, I can tell that we changed this person’s life by providing hope so they could continue on with their life and manage their disease. Meeting people at conferences and working with them over the phone is truly rewarding. Sometimes it can be an emotional experience to learn that the foundation has been able to do to help save lives. These are the things that inspire me and really keep me going.
What makes you hopeful: The increase in development of treatments for our disease areas make me hopeful. There is more emphasis and research in pemphigus and pemphigoid. Also, knowing that there are treatments available for patients like myself and that remission is attainable provides me hope. I realize that It takes time, but with the continued efforts of all of our stakeholders we can reach the point where treatments will be available.
Best organization decision: Deciding to have our organization to focus on research and drug development. We have put an emphasis on research and now we have launched a research grant program, have a natural history study, and continue to push the envelope as far on new treatments and novel treatments that will help our patient community.
Hardest lesson learned: You can’t help everyone and the loss of life due to the lack of treatment or its availability is the hardest. It’s important that individuals understand that they have to advocate for themselves and ensure that they obtain and receive the proper treatment. Since pemphigus and pemphigoid are rare diseases, many healthcare professionals either don’t know about these diseases or understand how to treat it.
Toughest organization decision: Any time that you have to decide that you can’t not move in a direction or execute a patient-focused program due to not having the necessary funding can be tough. However, you must have the proper resources and capacity to provide patient resources.
Biggest missed opportunity: Not to be able to grow as fast as we like to due to funding, capacity and resource issues because we are small.
Like best about the job: Talking to patients one-on-one. Being able to hear from my peers and hear about the impact we are having on their lives is very rewarding.
Like least about the job: Not having the resources that we need to grow our programs, and keep the organization funded so we can provide life-saving services to patients.
Pet peeve: My pet peeve is poor communication. Nobody like surprises.
First choice for a new career: I enjoy helping other people and advocating, Lobbying!
Most influential book: The 7 Habits of Highly Effective People: Powerful Lessons in Personal Change by Stephen R. Covey. I spend a lot of time reading management books.
Favorite movie: Dead Poets Society
Favorite music: Reggae music, it can be very inspiring.
Favorite food: That’s a tough one because I’m a foodie. I love to cook. Pizza is my favorite food if I have to be honest. It’s the go-to food. I could eat it seven days a week.
Guilty pleasure: Cooking. That’s what I really love to do. That’s where I’m in the zone.
Favorite way to spend free time: Anything with my family. Spending time with my wife and three daughters.
October 11, 2018