RARE Daily

Rare Leader: Deanna Fournier, Executive Director, Histiocytosis Association

July 8, 2021

The Basics
Name: Deanna Fournier

Title: Executive director

Organization: Histiocytosis Association

Social Media Links:

Disease focus: Histiocytic disorders are a group of diseases that occur when there is an over-production of white blood cells known as histiocytes that can lead to organ damage and tumor formation.

Headquarters: Pitman, New Jersey

How did you become involved in rare disease: I am a Langerhans cell histiocytosis survivor; I was diagnosed at the age of six and now 25 years disease-free. I became involved early on in my diagnosis, volunteering my time to help the association with a pen-pal club to connect patients and families around the world. As a young adult, I volunteered time at some events, participated in fundraisers, and in 2018 was asked to join the Board of Trustees.

Previous career: Global learning and development and business development. I worked in marketing/advertising, media research, and at a health coaching school. I am also an internationally certified health coach and ran my own business for a little over a year before taking this role on. I was also a wilderness EMT, helped with search and rescue in the White Mountains on occasion, and volunteered with my local fire department.

Education: Bachelor of arts and education with an emphasis on secondary education

The Organization
Organization’s mandate: To see a world free of histiocytosis. We are dedicated to raising awareness about histiocytic disorders, providing educational and emotional support, and funding research leading to better treatments and a cure.

Organization’s strategy: The Histiocytosis Association is the only organization of its kind, a global nonprofit organization dedicated to addressing the unique needs of patients and families dealing with the effects of histiocytic disorders that connects patient and medical communities around the world with the resources needed along every step of the way, while leading the search for a cure. We are long time partners of the Histiocyte Society, an international group of physicians, clinicians, and researchers dedicated to histiocytosis research, and help to take the administrative burdens of running an organization so that they can focus on driving forward progress across all histiocytic disorders.

Funding strategy: We are funded by the community, through events, grants, and donations.

What’s changing at your organization in the next year: We recently launched a new website and are going through a full audit of all of our disease information to bring to life the most recent advancements in knowledge about histiocytic disorders, treatments, target therapies, clinical trials, and resources.  We have a new interactive map where you can search for a physician by location and treatment specialty, a new podcast called ‘Beyond the Diagnosis,’ an Executive Director blog, and many new events. We are also building out many new resources, including our webinars that connect the medical community and patients together around various topics such as how histiocytosis can impact vision and the eyes, or the endocrine system and how it is involved or impacted. We are going to be sharing out wellness tips, yoga flows tailored to those who may need a variety of modifications or are experiencing high levels of stress, pain, and tension, and are expanding the network of resources we know of and work with, so that our community can have those at their fingertips. We are working collaboratively with several other organizations in North America and internationally and hope to be able to bring new experiences and opportunities to the international patient community, as well as to work together to be a catalyst for bringing the patient voice to the international conversation.

Management Style
Management philosophy: I am an inclusive manager, with an emphasis on goal setting, trust, respect, and empowerment.  I do not like to micromanage, however I want my team to keep communication lines open and flowing. I have biweekly one-on-ones with every member of the team, and it is a time for us to catch up on highlights/wins, to share challenges that are taking up their time, and to work together on any priorities, projects, or coachable moments. I do my best to manage with empathy and accountability, to position everyone on the team to be successful and feel room for growth, I strive to foster a positive working environment, and believe strongly in working hard with balance for personal time and self-development. I am always open to feedback, always ready and willing to listen, and am also always hoping to be able to grow and flex my skills.

Guiding principles for running an effective organization: Have integrity in everything you do. Put the community and your team first, and listen intently to their needs and desires, as they often have the answers for where you need to go next. Set ambitious goals and demonstrate competence in achieving them. Be honest. Know that you will sometimes have to fail on the way to success. Always approach everything with a curios mindset so that you can learn. Remember that financial health is very important. Make solid decisions; ask a lot of questions and get buy in from others including stakeholders so that you feel confident in your decisions being the best for the organization.

Best way to keep your organization relevant: Focus groups, webinars, podcasts, networking, and more focus groups. I feel you need to always be learning from others; a lot of amazing things are happening out the in the world and while no one is going to give you the answers in a box with a bow, they will often give you pieces of the puzzle that you can put together in the way that makes sense for your organization. I love learning from other leaders, seeking advice and guidance from the Board or other stakeholders, and I am a huge fan of speaking directly to the community who needs your services – if you are not sure where you need to focus, they can tell you what their needs are, and then it is your responsibility to seek out the best ways to make that happen.

Why people like working with you: Oh gosh, I think that would be because I am fair and kind, yet a tough manger with high expectations for output. I am open to listening to the feedback of others and will try to pivot when appropriate if something I am doing is not meeting the needs of my team, coworkers, Board, community. I do not take business feedback personally, so it makes it easy to make changes when necessary. The last thing I will mention is that I try to always show up with a smile, a positive outlook, and excitement for the work that we have been given the opportunity to do. It is important and it is making an impact on the lives of others.

Mentor: I have had a few mentors in my life; two coworkers come to mind from a previous role; they helped push me and grew my confidence in my skills as I was emerging into leadership positions and gave me the space to be creative. Our founder, Jeffrey Toughill, has been an incredible guide for me throughout the past year plus, helping me with big decisions and offering me his perspective on the places the organization needs to grow to in the future.

On the Job
What inspires you: The fact that there is always so much to learn, and so much we have yet to experience. I am also inspired every single day by the patience, perseverance, determination, and hope found within those fighting histiocytosis and other rare or not-so-rare diseases – and their families and caretakers.  It helps ground me; no matter how hard we think things are, someone is having a more difficult day and might be smiling right now. 

What makes you hopeful: There are so many amazing people out there, and organizations who are focused on doing a lot of good. I see individuals working tirelessly to benefit animals, the environment, mental health, physical health, farming and the ecosystem, and other people as well. In the rare disease space, you meet countless healers and good-doers, and it just continuously gives you hope. There are also so many inspiring providers and researchers who focus on histiocytic disorders – an incredibly rare group of diseases that impact 1 in every 200,000 children and adults – and they dedicate their careers to this. It gives me hope that we will eventually see our vision to see a world free of histiocytosis become a reality.

Best organization decision: One of the best decisions that we made was to partner with the Histiocytosis Society. They’re an international group of physicians, clinicians, and researchers. They focus on driving forward the progress on the science scientific side of his histiocytosis where the HA focuses on funding projects, but also all the patient aspects, the patient needs, the family’s needs. By partnering, we took the administrative burden off of their shoulders for running their separate nonprofit. They run their own organization, but because they are primarily made up of doctors, it allows them to just do what they do best. What it’s afforded us as well as a really wonderful relationship is we get to attend their meetings throughout the year. We have the opportunity to connect with them. Every once in a while, we’ll join a board meeting. We don’t have any influence over anything they do. And we don’t always know the ins and outs of what goes on. We are two completely separate organizations, but it fostered so much wonderful collaboration. Out of that grew collaborations with other organizations. There are a variety of different organizations around the world that we partner with now. Collaboration has allowed us that chance to really get to know all the ins and outs of patients’ needs, to see gaps that might exist, to learn more alongside the medical community, and to come together in support of our rare community-  we’re stronger together.

Hardest lesson learned: I stepped into this role with experience in all of the elements surrounding what it takes to run a nonprofit, however as a first time nonprofit leader. I came into this excited. I wanted to accomplish everything at once, and the pandemic hit a month into me accepting the position. We went to stay safe at home and we’re still at home. I had all of this energy and there were so many shifts and changes going on in the world, within our organization, for the needs of our patients and what we were actually able to provide them with. We’re used to being able to meet them in person throughout the year, and we couldn’t even do that. The hardest lesson that I learned in this experience was that you have to be super nimble as a nonprofit leader. You must have all your senses open, and just be ready to soak in what is happening, and pivot when you need to. That doesn’t mean shift focus completely, but you need to be able to just stay on your toes. It was a great lesson, even though it’s been hard.

Toughest organization decision: I would say that it’s really hard not to always take every single opportunity and try to go with it. There’s only so much time in a day. There’s only so many people that are working around in this space. The toughest decisions that we’ve had to make are around having to say, “We can’t necessarily do that right now.” That’s always a hard decision. Over the past year and a half, the hardest decision that we had to make was to not move forward with certain programs because they were in-person. But it allowed us to figure out how we can still provide the same service in a different way.

Biggest missed opportunity: I wish I would have done a little bit more early to share myself with the community so that everyone felt that connection. Our founder Jeffrey Toughill had been with the organization since the very beginning—more than 30 years. He still is very involved, and we adore him. He’s truly an angel on earth. I spent so much time in the beginning adapting to the pandemic that I didn’t spend enough time going live on social media, creating video content, and doing a lot of meet-and-greets with focus groups. There certainly was a part of our community that I feel that I likely missed. I’m trying to do more of that now, but I think that was important early on and wish I had done more of it. I hope that the community sees who I am and my passion for what we do, and through the work that we’ve done has felt that connection.

Like best about the job: The people. There is nothing like being around likeminded individuals.

Like least about the job: I would have to say the fact that there is so much to do and so little time in a day/week.

Pet peeve: Dishonesty and a sandwich with soggy bread.

First choice for a new career: The one I have now. If I could have two careers at once, I would dedicate my free time traveling to various parts of the world and helping with education, farming, building homes, and offering any other skills I may have to benefit others.

Personal Taste
Most influential book: The Happiness Project by Gretchen Rubin

Favorite movie: Once

Favorite music
: Folk, acoustic, jazz, classical, country, 70s/80s rock, and a variety of other genres

Favorite food: Grilled vegetables, fruit, salsa, and I will put avocado out here on its own.

Guilty pleasure: Chips.

Favorite way to spend free time: Anything active and outdoors – hiking, biking, running, rock climbing, snowboarding, camping … the list can go on forever.

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