RARE Daily

Rare Leader: Diana Gray, President and CEO, Hydrocephalus Association

August 6, 2020

The Basics
Name: Diana Gray

Title: President and CEO

Organization: Hydrocephalus Association

Social Media Links:

Disease focus: Hydrocephalus is an abnormal accumulation of cerebrospinal fluid within cavities in the brain called ventricles. Cerebrospinal fluid is produced in the ventricles and in the choroid plexus. It circulates through the ventricular system in the brain and is absorbed into the bloodstream. This fluid is in constant circulation and has many functions, including to surround the brain and spinal cord and act as a protective cushion against injury. It contains nutrients and proteins necessary for the nourishment and normal function of the brain and carries waste products away from surrounding tissues. Hydrocephalus occurs when there is an imbalance between the amount of CSF that is produced and the rate at which it is absorbed. As the CSF builds up, it causes the ventricles to enlarge and the pressure inside the head to increase. Hydrocephalus collectively is not considered a rare disease, but there are forms of the condition, including an X-linked genetic form, that are rare. More than 1,000,000 people in the United States currently live with hydrocephalus. There is currently no known way to prevent or cure hydrocephalus and the only treatment option today requires brain surgery. Hydrocephalus is the most common reason for brain surgery in children.

Headquarters: Bethesda, Maryland

How did you become involved in rare disease:  I had been working in public health and nonprofits for many years. When I was at the Lupus Foundation (LFA), I was contacted by a recruiter about considering a CEO position at Hydrocephalus Association (HA). After meeting with some of the board members and a search committee interview, I believed I could be passionate about the HA mission. I have a son with type 1 diabetes, so I understood the pain and concern from parents who have a child with a condition that is scary and life threatening. In addition, I felt like my experience in larger health organizations, like JDRF and LFA, would be useful. I became excited about the people, the mission, and the growth opportunities, and decided to join the Hydrocephalus Association in November 2015.

Previous career: Nonprofit executive

Education: Bachelor of arts degree in psychology and sociology with a minor in marriage and family relations from Anderson University and a master’s degree in counseling psychology from Ball State University.

The Organization
Organization’s mandate: The mission of the Hydrocephalus Association is to find a cure for hydrocephalus and improve the lives of those impacted by the condition.

Organization’s strategy: We have three core pillars of our strategic plan that drive the overall strategy of the organization. The first pillar is to find and engage the hydrocephalus community. There are more than one million people with hydrocephalus in the U.S. Some are undiagnosed and misdiagnosed, particularly an elderly population who develop a dementia-related condition called Normal Pressure Hydrocephalus (NPH). There are also those who have been diagnosed and treated and we haven’t yet connected with them. Engaging the affected community is integral to our ability to grow the mission and to provide services to that community. Our second pillar is to fund and promote high-impact research to advance care, treatments, prevention, and ultimately a cure for hydrocephalus. This is related to advancing our research agenda through basic, translational, and clinical science. Our third pillar is to improve the lives of those impacted by hydrocephalus at every age and every stage of life. This is centered around children who grow up and transition to adult care, as well as providing services to all adults with hydrocephalus. It also has a lot to do with the aforementioned elderly population with NPH, and making sure that we’re not just focusing on the pediatric diagnoses, rather that we are taking care of folks at every stage of life.

Funding strategy: Our funding is all private. We do not receive federal grants. We have scientists that we’ve funded who use the preliminary data from our awards to then secure federal grants from the NIH and DoD, which is a core part of our research strategy. We raise nearly all of our resources every year, unless, of course, it’s from a multiyear foundation grant or a pledge from an individual over multiple years. Our funding strategy has been to continue to diversify our resources. We try to incorporate innovation in our development efforts and, since I’ve been here, one of my priorities has been providing exceptional stewardship of our donors. It is always more difficult to secure new donors than to keep the people who already believe in you. We’ve really worked hard to make sure we have exceptional stewardship. That said, last year we had our highest success to date raising just shy of $2.1 million in peer-to-peer fundraising through walks, which made that half of our revenue. Hence, the need to diversify because we’re so proud of the success of our walks held all across the country, but due to the financial impact of COVID-19, peer-to-peer fundraising holds more risk. Another part of our strategy is that we continue to grow our major donors of $5,000 and above, with our largest gift to date of $1 million.  We also have a successful comedy fundraiser that’s normally held in April and it’s called “In Stitches.” We’ve hosted this event in Los Angeles for two years and it’s raised about $300,000 each year. We believe this has helped us to reach a different audience. We now have an opportunity to take it virtual, which could give us access to a larger, national audience.

What’s changing at your organization in the next year:  I think we will still be addressing the COVID-19 pandemic throughout the next year, and/or recovering from it. We’ve already observed changes in how service is delivered. We’ve seen a resurgence of a desire from our community to connect via online groups. We have hosted about 60 in just a few months, which is about four times the number of group meetings that were held all last year. That’s a change—this desire for the community to get together more and feel that sense of connectedness that was not as great pre-COVID. Also, we had a successful national virtual conference at the end of June with more than 2000 registrants from 65 countries. We had originally intended to host our conference in Houston. We had to make the hard decision to make it virtual and were so pleased to see it become more successful in many ways. Without question, we reached more people through this platform. Finally, I believe organizations have found new innovations arising out of this crisis and we plan to continue to build upon the learnings from this time.

Management Style
Management philosophy: My passion is building and growing organizations and people. I truly enjoy developing people and teams. I like to surround myself with a management team that brings skills and perspectives other than mine. This diversity makes us better as an organization. I believe success is directly related to having the right people in the right roles, and they need to feel valued and appreciated, and that comes from the top. I believe in flexibility of work. It doesn’t need to happen in an office or during a rigid set of hours. People appreciate knowing that they have flexibility as they seek to manage work/life balance, but at the end of the day, they need to know what’s expected of them and have accountability for achieving goals. I also have an open-door policy. I realize everyone says that. It floats off the tongue of every CEO, but I believe that anyone can come to me with a problem or an idea and they often do. I believe that feedback should be timely and that you should praise people in public and share concerns in private. Finally, I believe that as a CEO, I have to be willing to make hard decisions when needed.

Guiding principles for running an effective organization: Again, one of the key tenants for running an effective organization is to have the right people in the right roles. That’s an easy thing to say and not always easy to do, but I still believe it’s critical to strive to have the best people in your organization performing work about which they are passionate and successful. Further, I believe that, especially for nonprofits, it’s important to recruit a strong and diverse board of directors and to make sure they understand their roles and how they support the organization. It’s also important to take calculated risks to grow and evolve. I believe in creating a management team of talented experts who can provide sound advice to the CEO and to each other, as well as bring competency to direct their areas of the business. It is also important to listen to your team with an open mind. Further, I think it’s important as a CEO to understand my industry and surround myself with peers that I can trust and share best practices. And finally, I strive as a CEO to endeavor to be a level five leader, right out of the Good to Great playbook. I believe the more we strive to be strong, effective leaders as CEOs, the better positioned we are towards having an impactful organization.

Best way to keep your organization relevant: Being relevant in 2020 is about embracing technology and all the opportunities in which the evolution of technology can help us to engage more people and provide real-time information in innovative ways. There are a lot of ways we can be relevant, but if we’re going to provide services, information, and help to our constituents, most of the effective ways we’re going to do that is through being at the forefront of the latest technology.  Finally, we must regularly examine our values as an organization related to diversity and inclusiveness from the staff and board levels to patient representation. While we may feel as though we are giving attention to this need, we can always improve.

Why people like working with you: I believe that people like working with me because I’m a passionate leader who has integrity, demonstrates transparency whenever possible, and genuinely cares about my colleagues. I’m not afraid to make hard decisions when needed. Finally, I hope they like working with me because I like to have fun while doing all of this.

Mentor: I’ve had many mentors in my career and often learn new ideas from peers. I’m currently part of two CEO groups and find those incredibly powerful in terms of listening, sharing, and learning from each other. I also have some tremendous board members that have served as mentors in different capacities.

On the Job
What inspires you: What inspires me is when I see someone, whether it’s a staff person or a volunteer, who is “all in” on our mission, going above and beyond to make something successful because they really understand the impact of their actions. That’s exciting to me.

What makes you hopeful: I’m inspired by what we have been able to accomplish through research at the Hydrocephalus Association in just over 10 years. We’ve been around for 37 years but started our research program in 2009. We set out to build the ecosystem of hydrocephalus research because there wasn’t a lot happening. We’ve been successful at funding innovative, basic, and translational scientists in just a decade. We have invested $11 million in basic, translational and clinical research, and our funded scientists have gone on to secure more than $32 million in federal grants from the NIH and the Department of Defense. It’s exciting to see this type of return on our investment, and it gives me hope that a different future for those with hydrocephalus could become a reality.

Best organization decision: My best organization decision was coming in and building the capacity of our staff and our systems.

Hardest lesson learned: Pay attention to what is not said in a relationship, as well as the verbal communication. When in doubt, clarify and ask more questions.

Toughest organization decision: I’m not sure I’ve made the toughest decision yet, but I am making tough decisions regularly right now. This is the most trying time to be a chief executive officer. This pandemic has tested our whole sector in multiple ways because we have never seen anything like COVID-19 in our lifetimes. I feel as though I am forced to make hard decisions constantly about investments that will help us engage our community and expenses that are part of our core mission. I think the toughest organizational decisions are happening right now in 2020, not just for me, but for all nonprofit CEOs.

Biggest missed opportunity: I would say it was a program idea that I initiated called Walk Fast Track. It ended up having a positive return on investment, but not nearly what we projected. I had applied experiences from working in a larger organization to our smaller organization and expected that there would be similar results. I had added a couple of staff and charged them to work in a few key markets to grow them. Within the large organizations where I come from, most walks were staff-led with volunteers supporting. Here at HA, all our walks are executed by local volunteers with staff support from our national office. I believed by adding staff in large markets, we would be successful at engaging more people and growing revenue. It didn’t happen as quickly as I had hoped. I still feel like it’s a missed opportunity because I believe if we’d had the right timing and outlined the role expectations better, it could have been highly successful. Sadly, I ended the program, but hope to try something similar at some point in the future.

Like best about the job: The aspects of the job I love the most are strategic discussions with our staff team and the board, as well as developing and inspiring people and teams. It’s exciting to me when a staff person learns a new skill or has success. That’s very validating. I also love connecting with our supporters and it’s exciting for me to see our organization grow and evolve. Those are the best parts of this job.

Like least about the job: As a big picture thinker and people person, I don’t love time-consuming, administrative work. I don’t enjoy editing minutes for example, but I do it, because we all have responsibilities like this.

Pet peeve: My pet peeve would be college graduates who can’t spell or use proper grammar.

First choice for a new career: The path I was heading down originally — counseling  — would be my first choice for a new career.  I believe I would enjoy having a counseling practice. I also initially pursued a minor in music in college due to my experience in vocal performance. Therefore, it could be fun being a nightclub singer too.

Personal Taste
Most influential book: I love reading fiction, especially discovering a great novel. If I’m forced to pick, I would pick A Tale of Two Cities by Charles Dickens and anything by Jane Austen. I love her female heroines. I’ve read many of the classics, but I also love a good spy thriller, like the Gabriel Allon books by Daniel Silva and Vince Flynn’s Mitch Rapp books. I find that fiction provides a nice escape from the stress of life.

Favorite movie: My husband and I really enjoy going to the movie theatre and have sorely missed this during the pandemic. As far as favorite movies, I have many, but I narrowed it down to Skyfall, Pride and Prejudice and the Sound of Music. I also love all the Marvel and Bond movies. There’s a part of me that is really drawn to period pieces and musicals, but I love action and thriller movies too.

Favorite music: I like a diverse array of music from rock to classical. My favorite band of all time is the Beatles. When they broke up, I was only 6 years old, but having older brothers, I heard the music throughout my house as a kid. I always have the Beatles station marked as a favorite on my XM.

Favorite food: I have a lot of favorite foods, even though I am known to be a very picky eater. I love great pizza. The other favorite for me is a French dip from the Woodmont Grill in Bethesda.

Guilty pleasure: A massage

Favorite way to spend free time: Spending time with our children and first grandchild. I love travel, going to the movies, the theater, reading good novels, and going to the beach.


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