Rare Leader: Allison Fine, Founder and Executive Director of the Center for Chronic Illness

The Basics
Name: Allison Fine

Title: Founder and Executive Director

Organization:  Center for Chronic Illness

Disease focus:  Providing emotional support for those living with ongoing health challenges.

Headquarters: Seattle, Washington

How did you become involved in rare disease: For the last 11 years I’ve been working with folks with chronic illness in my counseling practice. I started off doing work with those in the multiple sclerosis community and expanded to Parkinson’s disease patients. As someone who identified themself as a chronic illness therapist, I started getting referrals from folks dealing with lots of different health challenges. I was seeing a lot of gaps in the support system for folks who live with ongoing health challenges and started CCI to fill in some of those needs. My first introduction to the rare disease community was last year when we participated in the Rare Disease Fair in Seattle. When I started the organization, I knew a component of the work we do would be with folks with more rare conditions and ambiguous health issues that don’t have a name.

Previous career: I am a clinical social worker with a private counseling practice. I specialize in counseling people with chronic illness. I still do this work half of the week and do my nonprofit work the other half.

Education: Bachelor’s degree in psychology and a master’s degree in social work from the University of Kansas, Lawrence; licensed in the state of Washington as a clinical social worker

The Organization
Organization’s mandate: Our goal is to provide emotional support through professionally-led support groups and health education programs for people impacted by ongoing health challenges.

Organization’s strategy: We provide different types of groups to meet different types of needs. We have groups that are focused on caregivers, groups that are focused on patients, and groups that are focused on skill building. We have two mindfulness support groups. We teach people meditation and self-compassion as a means of coping with symptoms. In the longer term, our strategy is to expand these offerings even further. One of our other goals is to offer web-based programs as well for people who can’t attend in person. We want to continue to expand the way we reach people and make our programs more accessible to those who need them.

Funding strategy: We’re in our second year. We have a diverse funding strategy, though at this time we’re mostly funded by individual donors. It’s difficult to build the case for funding when you’re still building a track record as an organization. We are grant writing, as well as looking for corporate sponsorships. In my ideal world, we would bring in funds in a variety of ways to keep us as financially stable as possible. All our programs are free of cost. I felt strongly about this when I started this organization—chronic illness can be so expensive for patients, and I wanted all our programs to be accessible in this way to anyone who needed them.

What’s changing at your organization in the next year: We just received some funding to launch our first two web-based support groups and to purchase the platform we’ve been looking to use. That’s a huge change for us. Being able to offer web-based programs will theoretically allow us to offer emotional support to anyone anywhere.

Management Style
Management philosophy: I always go back to what I learned in my graduate program, which was that building relationships with people is the most important thing you could do as a social worker. I try to implement that in my work, whether it’s with patients, or support group facilitators, or relationships out in the community we’re trying to build. I try to be open and approachable.

Guiding principles for running an effective organization: Because I’ve already run another business for many years, I look at this not only as a nonprofit, but as a business. Financial stability is really core to the work that we’re doing. If we don’t have the funds, we can’t continue to offer our programs. That’s one of the goals that we’re working toward in our second year. In addition to that, I believe it’s important to always have some ties to the population that we’re trying to serve and understand what the needs are and what would be most useful to people in the programs we develop. When I look at what’s going to make us successful, I think that and what I said about relationship building are core to our success as an organization.

Best way to keep your organization relevant: I think not getting too focused in on one particular area. In this day and age, you have to be on social media. As a new organization, I’ve worked hard to try to build our social media pages out to access different populations that might spend more of their time on the computer. We also have a number of seniors who attend our groups, so we recognize that’s not the best means of communication for them. I’m looking at the whole picture of the organization. If we’re just focused on the programs, we might miss out on the marketing or PR opportunities to make our organization stronger. If we just focused on fundraising, we might lose sense of our mission. As an executive director, I try to look at the whole picture to keep us relevant.

Why people like working for you: I’m approachable and kind. I try to empower people to be a part of the organization and be a part of the cause. I’m also flexible.

Mentor: I have so many. I had an excellent professor when I was in social work school years ago. There’s an executive director of another organization who’s been coaching me as far as being in my role as an ED and the many hats that are involved. I have many people in my personal life who help to support me and keep me on my path.

On the Job
What inspires you: We recently did a program evaluation with not just quantitative data, but qualitative data as well. I’ve heard stories of people who have been part of our groups. It touches the heart to know the programs that we developed are meeting the goals we hoped to meet. They are talking about feeling less isolated and more connected to their community. That really inspires me to know that all the time and energy I’ve put into this is worthwhile for the people who need it the most.

What makes you hopeful: What makes me hopeful is the fact that we’ve made it to year two of our organization and we’re continuing to get more interest and support. It makes me hopeful that we’ve created a resource that is needed in the community, not just for patients, but for healthcare professionals, too. People say, “This is such a great resource. Why didn’t it exist sooner?” It makes me feel as though I’ve created a necessary and sustainable resource for the chronic illness community.

Best organization decision: In January, we had the opportunity to bring on a first-year social work MSW intern. As a solo staff person for the organization, I wear the majority of the hats, and it’s so nice to have some help and for her to benefit through her learning and school credits.  I’ve also learned a lot about my own management style as well as how to ask for help. That’s helped us grow in a big way.

Hardest lesson learned: As an entrepreneur and founder, I have a vision for how this all should go. Sometimes my own expectations of where we should be are different than what is happening or what is possible. The biggest challenge for me is to learn how to adjust those expectations. It’s also a blessing in disguise to do that and develop that skill because I think running a nonprofit is all about adjusting expectations.

Toughest organization decision: We have rough days, but nothing I’d look back on and say I wish we didn’t do that or wish we had done this differently.  We couldn’t do all the program launches we wanted to do at a point in time, and we haven’t gotten a number of grants we’ve applied for so those are certainly disappointments, but it’s really about setting and adjusting expectations when something doesn’t go as planned.

Biggest missed opportunity: Being in our second year, I feel like we haven’t had a lot of missed opportunities at this point in time. There hasn’t been anything we’ve had to say no to in a bigger way. We’re lucky in that way, but I imagine this will come up for us in the future.

Like best about the job: There are so many different hats to wear. That can be a bit overwhelming at times, but I like being able to be a web developer one day, and a marketer the next, and other days a fundraiser, and other days focus on programs and what’s best for patients. I love the diversity of being able to wear all those different hats and having new learning opportunities and challenges in so many different areas.

Like least about the job: What I like least is the fact that my to-do list is never going to end. Part of this is the founder mentality. There’s always something new and different and exciting that we could be doing. My to-do list and my ideas never really end. When I have an idea, I put it on the list, even if it is something I’m not going to get to for another three years, because I just don’t want to forget that idea came about. That can be overwhelming, but I’m learning ways to manage the list and again, my own expectations.

Pet peeve: May pet peeve is people who don’t communicate. I am a trained communicator as a social worker, and I forget not everyone has those skills.

First choice for a new career: I’d love to be a nature photographer.

Personal Taste
Most influential book: I enjoy reading so many different genres, so it’s difficult to choose just one. Recently, I’ve been reading The Introvert Entrepreneur: Amplify Your Strengths and Create Success on Your Own Terms by Beth Buelow.

Favorite movie: I’m a die-hard Harry Potter fan. I can read the books and watch the movies over and over again.

Favorite music: I have eclectic taste. It depends on my mood. I like softer Indie and hip-hop. Sometimes I prefer more instrumental music. About the only thing I don’t like is country music.

Favorite food: Chocolate

Guilty pleasure: Looking at fashion magazines

Favorite way to spend free time: I like cozying up at home and watching a good show or movies with my partner or being outside and enjoying some of the beauty Seattle has to offer.