RARE Daily

Rare Leader: Diane Powell, CEO, The Hypersomnia Foundation

July 1, 2021

The Basics
Name:  Diane Powell

Title: Board chair and CEO

Organization: The Hypersomnia Foundation

Social Media Links:

Disease focus:  Idiopathic Hypersomnia (IH) is a chronic neurological sleep disorder, causing excessive daytime sleepiness despite adequate, or more typically, long sleep amounts (more than 9-10 hours in a 24-hour period). People with IH often struggle to wake, despite setting multiple alarms, and have difficulty rising from bed (called sleep inertia). They may start the day feeling extremely groggy (sometimes referred to as sleep drunk) and can experience significantly reduced focus and concentration during waking hours (called brain fog). People suffering from idiopathic hypersomnia often live without a correct diagnosis for a long time, blaming themselves and struggling to maintain work, studies, and relationships.

Headquarters: We’re incorporated in Georgia, but we don’t have brick and mortar headquarters. We have always worked virtually, and our board members, ED, and volunteers are scattered across the country.

How did you become involved in rare disease: My daughter was diagnosed with idiopathic hypersomnia at the age of 19. She had symptoms throughout her teen years, and her doctor had tried to work out what was causing her excessive sleepiness–but unfortunately, the doctor never suggested she might have a sleep disorder. I’m forever grateful to her college campus doctor who recognized her sleep problems couldn’t be explained by anything in her health history and sent her for a sleep study. When she first told me she had been diagnosed with idiopathic hypersomnia and relayed the doctor’s explanation, I thought “Great, we have a diagnosis, there will be a treatment, and she’ll be fine.” It wasn’t until I attended the first conference of the Hypersomnia Foundation in 2015 that I understood the complexities of her disorder, and that nothing about it was going to be easy.

I’ve seen that same reaction in other family members who attend our events. Since we all have days when we are sleepy or tired, it can be hard to grasp that this is not the same kind of sleepiness–that this is a chronic, neurological disorder. To explain it, I often ask people to think back to a time when they were jet-lagged or were up all night and had to work the next morning. They probably struggled throughout the day to ignore the persistent longing for sleep and to concentrate on the tasks at hand. When they finally got to bed that night, they likely had a long sleep, and woke the next day feeling much better. Imagine if, instead, they woke up feeling just as tired and desperate for sleep as the day before. When I explain it that way, it’s pretty evident to people how much idiopathic hypersomnia would affect their functioning.

Previous career: I’ve had two previous careers. I’m a licensed clinical social worker, and I treated clients in community mental health centers and in private practice. Before that, I was in Washington, D.C. working behind the scenes in television news.

Education: B.A. Government and Politics, The University of Maryland, and an M.S.W. (Master of Social Work) from California State University at Long Beach.

The Organization
Organization’s mandate
: I think our mission statement says it all: “The Hypersomnia Foundation engages, informs and champions our global community to improve the lives of people with idiopathic hypersomnia and related disorders.”

Organization’s strategy:  Every idea, every opportunity has to link back to our mission, obviously, and then we assess the potential results. Will it raise awareness, or encourage research, or improve the lives of our community in a meaningful way? Is it in step with changes we’re seeing in this space? Do we have the resources? I think we’ve been very effective because of the choices we made. Also, each year we hold a strategic planning session with the Board to assess and re-examine our direction. This year, we’re holding a series of those meetings over the summer.

Funding strategy: Our funding comes primarily from our community, including our Board. Many of our donors are on disability or are limited in other ways by their sleep disorder. And as I mentioned, unless people know someone with a sleep disorder, it’s difficult for people to understand the impact. We are appreciative of every donation from members of our community, and their friends and families. We just held a virtual bike fundraiser dedicated to research, and we hold a fundraiser every November-December. We also get funding through grants from the industry for our patient education efforts. Ultimately, it’s our careful stewardship of our donations that keeps HF in a strong and secure financial position.

What’s changing at your organization in the next year: We’ve built a Board that is talented and diverse, and we will continue to focus on DEI issues. We’re also working on a strategic plan this summer to prepare for growth. We’re on the cusp of seeing the first FDA approval for a medication labelled to treat IH. As IH gains a place on the map, the demand for the knowledge base of the Hypersomnia Foundation and our patient population is growing rapidly, and we want to be able to meet that demand—to make sure that the experiences and the needs of this population are understood. Also, I’ll come to the end of my second term next year, which means I’ll be stepping down, per our bylaws, so I am making sure that my successor has everything they need to meet the challenges ahead. And they can always call on me for anything they need. 

Management Style: A blend of visionary and “Let’s get it done.” Where are we going and how will we get there? As a Board, we develop our goals and strategies together. Once we’ve made a plan, I switch into let’s-get-it-done mode and commit to making it happen. Who on the Board has the talents which best match the needs of this project? Are they able to take it on? How can I support them? What logistics need to happen and who will be responsible for those?

Great ideas don’t mean anything without effective implementation. However, I am always mindful that we are all volunteers on the Board, and some members have IH themselves, so I’m also sensitive to people’s limits, which often means rolling up my sleeves to help. We expect a lot from Board members, so I encourage them to take real time off from HF, and of course, family matters take precedence.

Management philosophy:  No drama. I’m fortunate to have a fantastic, professional team on the Board with a similar attitude and above all, a strong focus on our mission.

Guiding principles for running an effective organization: Appreciate your team’s strengths and let them know it. Make sure communication is effective and transparent. Recognize when it’s time to abandon texting and pick up the phone. And, give all views a hearing, but keep decision-making on track. Consensus building is best and is usually, but not always, possible.

Best way to keep your organization relevant: Listen to the community; stay open to new ideas, plan for growth.

Why people like working with you: I hope they see me as dedicated and hardworking, appreciative, and approachable.

Mentor:  When I first joined the board, co-founder Cat Rye was a great mentor, especially in my early months as board chair and CEO. Now I reach out to board members and advocates in the community when I need a sounding board or another view. I’m lucky we have so many wise, talented people in our orbit.

On the Job
What inspires you: Ana Krieger, a physician on our medical advisory board, once told me how much she admires the courage of her patients. I couldn’t agree more. Getting to a diagnosis and finding a treatment, often while enduring the skepticism of those around you, takes courage and determination.

What makes you hopeful: The level of interest in developing treatments for this disorder was minimal when I joined HF; now there are a number of researchers and companies working in this space. It’s an incredible shift from even a few years ago.

Best organization decision: Setting up a search committee this summer to find our first paid CEO. Their salary will be funded by a private, designated donation for the first three years. We’re still in the process of that search, but I know we will find the right person to build on all the work of the board. The foundation is seven years old, and we’ve accomplished a lot. It’s time to expand our capacity.

Hardest lesson learned: Not every sleep organization has a no-drama approach. Sometimes, despite our best efforts to work with everyone, there’s no choice but to step away.

Toughest organization decision: Not to run our own support groups. We’d love to do that, but it has to be done with a great deal of care and thought. A group needs to be inclusive, consistent, and it needs a dedicated facilitator. Ultimately, we’ve decided our focus needs to be on awareness and especially, on advocating for research and improved treatments. Fortunately, there’s an organization in Atlanta called the Hypersomnia Alliance, that does run support groups. They even organize a trip each year for people with hypersomnia disorders called the “Snoozecruise.” Diana Kimmel, one of the co-founders of HA, is also a very helpful resource to anyone who wants to start a support group of their own. She’s spoken about that at some of our events.

Biggest missed opportunity:  We were talking about DEI issues several years ago. We did make sure that our materials and our site portrayed a variety of people of different ages and ethnicities, but I wish we had formed our DEI Task Force much sooner. We formed the group about a year ago.

Like best about the job:  The hands-on aspect of our board means that we personally do the work on behalf of our community–we organize the events, write the grants, develop the patient resources. All of that is actually done by the board with the help of one part-time employee and our volunteers. The opportunity to engage like that, with equally dedicated colleagues, and effect real change is an incredible gift. I often refer to HF as a “small but mighty” organization. I’m very proud of all we’ve achieved.

Like least about the job:  Never enough time and bandwidth for all the things we’d like to do.

Pet peeve: Thoughtless reactions to this disorder. Because IH is an excessive sleep disorder in a world where everyone, it seems, complains they are “tired,” we often hear flip comments. From members of the public, it’s understandable, but less so from the medical community. A couple years ago, an ER doctor in a major urban hospital told my daughter that IH “must be a nice disorder to have.”  I sent a strongly worded letter to the medical director! And we did receive an apology, but I wish I’d had a link to a CME course to send to him. That can’t come soon enough.

First choice for a new career:  My Board term is wrapping up in 2021; I’m looking forward to being an HF volunteer and supporter and viewing the foundation’s work as a member of the sleep community.  I think that will be an interesting perspective.

Personal Taste
Most influential book:  Two: Waking Matilda, by Claire Crisp (of Wake Up Narcolepsy) and Wide Awake and Dreaming, by Julie Flygare (Project Sleep). Both really great books about living with a sleep disorder.

Favorite movieThe Theory of Everything

Favorite music
:  Motown

Favorite food:  Anything my husband cooks. He has a wide repertoire. He cooked for us every night during the pandemic, and it was wonderful.

Guilty pleasure: Old black and white movies: The Maltese Falcon, His Girl Friday, The Philadelphia Story

Favorite way to spend free time:   Drawing and painting




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