Rare Leader: Mary Anne Meskis, Executive Director, Dravet Syndrome Foundation

The Basics
Name: Mary Anne Meskis

Title: Executive Director

Organization: Dravet Syndrome Foundation

Social Media:

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Headquarters: Cherry Hill, New Jersey

How did you become involved in rare disease: I have three children. Myyoungest son, who is now 19, had his first seizure at the age of 6 months and he was diagnosed with Dravet syndrome when he was about 4.

Previous career: My husband and I have owned several small businesses throughout our careers both together and separately. We currently own and operate a business that supplies window coverings and draperies for commercial settings. We’ve had this one in the family for the last 25 years or so. We serve restaurants and banks, things like that. I’m not really involved anymore in the day-to-day operations of that. My focus is primarily on the nonprofit at this point.

Education: High school graduate

The Organization
Organization’s mission: Our primary focus has always been on research for Dravet syndrome, but we also try to focus on professional education as well as our caregiver education and advocacy.

Organization’s strategy: We have a pretty small staff and we all have primary programs that we work in. But everyone is also trained to work across programs so that if at any time we need extra help on something, someone can transfer over easily to it. We’re big on always trying to work smarter rather than harder because of the size of the staff that we have. We’re always open and looking for easier ways to accomplish our goals. If that means collaborating with another organization, or maybe incorporating another type of software, we’ll do that. We’re big about setting our list of objectives and priorities for the year and then delegating that out to everybody. We’ve also learned that it’s important to give ourselves some flexibility throughout the year because we’ve been able to undertake new opportunities that arise unexpectedly that we had never planned on, but feel are vital to our growth.

Funding strategy: Early on, we realized we were going to have to try to be as diverse as possible for our community as most rare disease patients have a lot of medical expenses. Often, they are not our primary donors. When we started, we tried to come up with some different fundraising strategies. We’ve developed a series of events and materials over the years that make it easier for our supporters if they’re interested in hosting or participating in events. We’ve also tried to be conscientious of designing events that fall at different levels for families to participate. For instance, if they can’t afford to come to our annual gala, they could still afford to go to a walk, or they could participate in a virtual event. More than half of our income each year comes in through those fundraising initiatives that we consider our grassroots initiatives. And then we’ve also been able throughout the years to build some relationships and we do get some grants from private organizations and industry partners.

What’s changing at your organization in the next year: One of the things that I’m most excited about would be a research grant program that since 2009 has been able to award more than $4.1 million thanks to the generous support of our families and friends at the organization. As a result, this year we have had enough additional funding that we were able to add a request for proposals for genetic approaches as part of our research grant program. That actually just closed. They’re in review right now and we had a very enthusiastic response, which we were happy about. On the advocacy side, we are undergoing a joint project with a sponsor and we’re going to be offering a multi-faceted support program for caregivers. It’s going to be focused on caregiver burden and PTSD. What we think is really unique is that there’s going to be an archived video series. We’re also going to host virtual, guided support meetings. For families who aren’t able to attend or sign up for these types of things in person because of geographic restrictions or because of the health of their child, they’ll still have an opportunity to find support.

Management Style
Management philosophy: It’s always been about taking the time to find the right people who have the drive and the motivation. Making sure you equip them with the tools and the support they need to succeed. And then, let them run with it. I found from my personal work experience, or even volunteering, that if you’re able to derive the sense of satisfaction from what you’re doing, you stay engaged. You want to be a part of it, and you give your all to it. The other thing for us is that we always try to be open to opportunity. We try to listen, see what’s going on, listen to other people’s input, take their advice, and see what comes our way.

Guiding principles for running an effective organization: Again, finding those right people. And we always try to use our mission to guide us and keep us on track for where we need to be prioritizing. We’re in the position in our organization where all of our staff, our board members, our volunteers either have a child with Dravet syndrome or have lost a child to the disease. Because of that, they’re all just really motivated and want to do what they can. We’re really big on being transparent to all of our supporters about our financials because we want them to know and understand how we’re spending the funds that they’re giving us and to show that we’re really good stewards of these financials. Again, always being open to opportunity. What is that quote? “Luck is what happens when preparation meets opportunity.” We’ve seen that happen again and again in our organization where things that have moved us forward feel like the right people were in the right place at the right time.

Best way to keep your organization relevant: That is certainly a struggle for us because, since it’s a rare disease, it’s really hard for us to get interest outside our immediate families. We do put a lot of work into our community relations with our families, but also with the professionals who work in the sector, industry stakeholders, and donors. We think that this is really good customer service. We want to make sure that we continue to engage them and thank them for what they do. And then, we try to share as much information as we can publicly about things that are going on behind the scenes, so they know what’s coming up and continue to get excited about the thing that are happening.

Why people like working with you: I do get significant satisfaction from seeing either my peers or staff members, when they’re finding their own footing and making a project their own, getting self-satisfaction out of doing that. I try to let them do that. I’m always happy to share advice and things that might or might not have worked but I genuinely enjoy their success. I think it’s a positive reflection on myself as a leader as well as on the organization. The other thing is that I never think of compromise as a loss, but it’s usually the best way to build a lasting relationship based on trust. I’m always trying to, if someone is stuck on doing something one way, or we’re trying to work together on a project, I try to offer as much give and take as possible so that we can come to an ending that everyone’s happy with.

Mentor: My parents have instilled a lot of my work ethic in me—about making sure you’re on time and you give 100 percent to your work, and that you can do anything you put your mind to. I did have a supervisor early on who really taught me the strength of teamwork and how to manage others. She was always direct and supportive. I feel like a lot of my management style has come from her. She was just a wonderful woman and made her employees feel special and gave them the guidance they needed to succeed.

On the Job
What inspires you: Our patients and our families. We all have kids. I’ll hear a newly diagnosed family’s story. I typically lived a part of that and that’s always what inspires me and drives me.

What makes you hopeful: It’s just the speed that we’ve been able to accomplish things by working together as a community. If you look at the field of Dravet syndrome, it’s been about 15 years since a commercially available genetic test became available and we’ve gotten a lot done in that short time frame. It’s because of the community coming together and wanting to see change.

Best organization decision: To establish and get our organization going. When we started, it was just me and three other parents. There was no other nonprofit that was focusing on research for Dravet. There was another one that was doing some work in advocacy. The original parents were all frustrated and we didn’t look much past that goal of “Let’s fund a grant and see what happens.” But, because of everyone else in the community who was enthusiastic and wanted to continue to make things happen, it’s put us on the map.

Hardest lesson learned: That’s an easy one. We have a really great scientific advisory board chair who’s out of the University of Michigan, Jack Parent, early on, probably the first year into the organization, that he said, “You have to remember that sometimes science doesn’t move as quickly as you want it to as a parent.” That’s really stuck with me. It’s hard to accept that even if tomorrow we suddenly had $50 million and we wanted to make something happen, it wouldn’t necessarily mean there’d be a cure for my child in his lifetime.

Toughest organization decision:  Having to sometimes slow down our growth to make sure we are doing things right. The organization gained traction much quicker than any of the original founding members anticipated. While wanting to take advantage of any opportunity that arises, we also have to sometimes slow down the timeline or forgo focusing on something to make sure other programs are not suffering.

Biggest missed opportunity: A lot of times these opportunities come up and even though we really don’t have the time to execute them, they’ve somehow happened just because the community is so driven to see them happen.

Like best about the job: I‘ve been fortunate that I’ve had a lot of funny job opportunities over the years and I’ve never really had a job I’ve hated, but nothing compares to being able to be doing something that you feel is making a change for the better. I’ve just gotten a significant amount of fulfillment from this position that I’ve never had in any other position.

Like least about the job: It always feels like there are still so much more that we could be doing. Even with the things that we’ve accomplished, I feel like there are always ten different things in my head that I think wouldn’t be good if we had this or wouldn’t have helped and what I sometimes tell myself is, “Look, the work isn’t going to end until we get to a cure, so you need to pace yourself.” Yeah, I think it’s hard to sometimes actually enjoy the accomplishments when you’re always worried about what else needs to be done.

Pet peeve: I hate any type of pettiness or bullying. Everyone is fighting their own battles and it doesn’t cost you a thing to be nice. What I used to say to my kids’ friends when they were little and they were fighting was that the rule at our house and mantra was “Be nice or go home.” Sadly, I think that that really applies to a lot of things in the professional world as well.

First choice for a new career: Yoga instructor

Personal Taste
Most influential book: Give and Take: Why Helping Others Drives Our Success? by Adam Grant. I just really enjoyed it because, unintentionally, it’s kind of been my approach throughout my professional career. And that’s if you help others, it usually ends up in some way helping yourself down the line. It was nice to read stories of other people who had that same perspective because, I’ve had people in the past tell me, “Oh, you’re just letting them take advantage of you.” Or, “Why would you help them if they’re a competitor?” It soothed my soul to see there were other people out there like that.

Favorite movie: I don’t know if I have a favorite but, with our life and all of the ups and downs and unknowns, anything that makes me laugh or has a happy ending is always a nice thing to be able to experience.

Favorite music: I like listening to all genres of music. But, if we’re talking about an all-time favorite band, I would have to go with The Eagles.

Favorite food: I’m vegetarian. I still love pizza. I try to avoid it, but that one would win.

Guilty pleasure: Taking time for myself. Anytime I take any kind of break, I always have this little voice in the back of my head like, “You should be doing this for the organization.” Or maybe, “If you did this for Elliott, it would be helpful because of X, Y, or Z.” It’s very hard for me to turn that off and just let me have some downtime.

Favorite way to spend free time: I enjoy yoga when I’m able to do it in a class versus at home. Anytime I have the opportunity to travel for pleasure, I really enjoy that, especially with friends.