Rare Leader: Sharon Meyers, President and CEO, Hemophilia Federation of America

The Basics
Name: Sharon Meyers

Title: President and CEO

Organization: Hemophilia Federation of America

Social Media Links:

Disease focus: The organization is focused on rare, genetic bleeding disorders including hemophilia A, hemophilia B, hemophilia C, factor VII deficiency, Von Willebrand disease, and platelet disorders.

Headquarters: Washington, D.C.

How did you become involved in rare disease: I became involved with HFA through an employee there. Our sons were both in School of Rock together and a position became open in fundraising. She encouraged me to apply for it. I got to know the organization, and I got to know the community and meet our blood brothers. I fell in love with this community from the beginning.

Previous career: Held various executive positions in nonprofit organizations

Education: AA in Liberal Arts from Mississippi Gulf Coast Community College, B.A. American Studies from the University of Southern Mississippi, M.S. in political science from the University of Southern Mississippi, Certificate in non-profit/public/organizational management from Georgetown University; Ed.D. organizational change and leadership from the University of Southern California.

The Organization
Organization’s mission: Our mission is to assist, educate, and advocate for the bleeding disorders community. We do that through our assistance program. We have a program called Helping Hands, which is an emergency assistance program focused on people with a bleeding disorder. And then through education, we have a blood brotherhood program, a blood sisterhood program, a families program that has something called Dads in Action and Moms in Action. And then we also have a Spanish speaking program called Sangre Latina. And then of course we have many advocacy types of programs, such as a young adult advocacy summit. We’ll do a fly-in into Washington, D.C. Our mission statement is to assist, educate, and advocate for the disorders community.

Organization’s strategy: We’re trying to improve the quality of life for people living with a bleeding disorder. What we’re hoping to do is to remove any barriers to a diagnosis, treatment, or even a cure. We do that through providing information so people can make informed decisions for themselves. We’re not here to give medical advice. We’re here to provide information and we are often seen as a sage organization that gives information. That’s what we want to do. We do work at all levels—federal, state, and local—to remove barriers to treatment and care.

Funding strategy: The majority of our funding (and I used to be the fundraiser at HFA so I’m pretty adept at this one) is through pharmaceutical funding and through a lot of different areas of the community. We do have some government grants. It is normal funding for rare disorders, but we are focused on diversifying our funding through more foundation and government grants, and more individual giving and planned giving.

What’s changing at your organization in the next year: The one thing that we’re hoping changes is that we can be in person next year for our annual conference. We’re hoping that that’s going to be live. It’s April 20 to 23 and it’s going to be in San Antonio. We have a lot of new offerings, education, and advocacy. We’re going to continue to focus on mental health. We dipped the toe in that water this year, but we’re going to be moving forward to do more in mental health. Organizationally, we’re going to be doing more strategic planning because we want to be here 50 plus years from now. We want to make sure we are planning for the future. One exciting thing that we’re going to be doing next year is that we were able to get some of the bleeding disorders artifacts into the Smithsonian, the American History Museum in D.C. We’re hoping to have an event at the Smithsonian to celebrate the donation of artifacts regarding the bleeding disorders community.

Management Style
Management philosophy: I want to empower the leadership team at HFA, and I want to build new leaders at HFA. I’m not looking to have a lot of followers. I want to build trust with the staff at HFA and build loyalty toward the organization. That is my management philosophy. I’m here to empower others.

Guiding principles for running an effective organization: Keep focused on the mission at all times. We started this year with a history of what I told you about with the Smithsonian. We went back through history and talked about everything. We were focused on the mission. As a matter of fact, at the beginning of every meeting, we have someone share a reflection on something that’s meaningful to them and then how it applies to the bleeding disorder community. We never want to forget our history, but then we also want to build smart at the organization. We want to make sure that we’re not just building for the sake of building. And then we want to be efficient. A good nonprofit is supposed to be efficient and good stewards of their money. That’s how we want to run an effective organization. Build smart and be efficient, but never forget who we are and why we’re here.

Best way to keep your organization relevant: Reach the people where they communicate the most. The majority of our community is on social media. We have to be savvy when it comes to social media so we can stay relevant. We want to make sure that we’re keeping our education relevant to what the needs of today are. We can’t use education modules that were appropriate 20 years ago. We have to keep up with the times. And of course, with advocacy and policy, we have to look and see what is changing every single day in every single state. To stay relevant, we have to stay on top of that. Again, we’re here to provide information so the community can make informed decisions and to do that, we have to stay on top of everything that’s happening, but we have to communicate where people normally communicate and that’s how we stay relevant.

Why people like working with you: I thought about this one a lot. I went onto LinkedIn and one of the people I worked with at a previous location posted for me. She said that I have a high sense of urgency and that I will work hard, but that I’ll also laugh as much as I work. I loved that because we do laugh all the time.

Mentor: I don’t have a mentor per se—not one I should say. I have a lot of mentors every day. Smart leaders learn from others on a regular basis. Even today I learned something new from our policy and advocacy team and I think the team understands that I continually solicit feedback so they want to mentor me to be an effective advocate for the organization. My mentors are a lot of people. I’m learning from everyone that I speak to in this community, everyone at the organization, community leaders, and other leaders from other rare disease organizations. I’m constantly learning and synthesizing information to make the best decisions possible. Mentors are everywhere if you look for them.

On the Job
What inspires you: The resiliency of the bleeding disorders community inspires me every day. I don’t have a bleeding disorder and there are times when I’ve had to work with insurance companies or work through medical issues. I get frustrated and I can’t imagine having to do that on a regular basis or the challenges that this community faces on a regular basis. It inspires me and touches my heart to see how people can have a smile on their face or they’re laughing or they’re talking, or they’re just so appreciative of any help that you can give them. That inspires me every day because I want to do the best I can for this community. I want to make them proud.

What makes you hopeful: We’re lucky in the bleeding disorders community, because we do have a lot of new therapies coming down the pike and have wonderful therapies that have come out recently. It’s the better quality of life, or any increase in quality of life for people living with a bleeding disorder that makes me hopeful. I’ve witnessed, over the six years I’ve been at HFA, people who have been in a wheelchair every day who’ve been able to run to me in an exhibit hall when they saw me. I’m telling you it makes me cry when I see that, because I’m hopeful that things will continue to improve, and quality of life will improve.

Best organization decision: There’s been a lot of organizational decisions. One recent one and one of the best organizational decisions we made last year was to create a COVID-19 fund. I told you earlier that we’re here to assist, educate, and advocate. We have a helping hand fund, which is for emergency financial assistance and we created a COVID-19 emergency assistance fund which is an offshoot of helping hands. We did that because so many community members were out of a job and needed help during the pandemic. We solicited funds and we were able to get support. We were able to help a lot of people with additional resources and funding. People were losing their jobs. They didn’t have money for food or to keep the lights on. We created another avenue to help people in response to the pandemic. That was a good decision because it we’re here to help this community and it made sure that we continued to help the most vulnerable. It was a good decision and it was a group effort. That’s what felt good. Lots of people inside the organization, outside the organization, funders, everybody came together to do what was right.

Hardest lesson learned: Even though you do things right, it doesn’t always win friends. Sometimes that’s been challenging because you feel like you’re heading down the correct path and people have other ideas and that’s been a hard lesson to learn. You’ll have a vision for things, but then not everybody always buys into your vision. Luckily, most people do eventually buy into it, but it’s the resistance that is hard because it just seems so logical. That was a hard lesson to learn.

Toughest organization decision: We have a 53-member board, which is a huge board. The reason it’s so large is because we have 50 member organizations, and each one has a board member. We also have two independent members and then a past chair. So, we have 53 members and that’s a very large board. The average board size is around 15 to 16 members. We made the decision, over this last year, that we would downsize the board to be about a 15- to 17-member board. That’s been a tough organizational decision because we had to have buy-in from lots of people. We had to have buy-in from the board. We had to talk through every single nuance of what that would look like for the organization, what federation means for HFA. And it’s been a tough organizational decision and one that most nonprofits don’t engage in because it can be so unwieldy, but I have to say our board chair, our board, our governance committee and our executive committee all did a great job talking about why this is important for HFA. It goes back to being an efficient organization and having a 53-member board is not efficient. We never knew we were going to grow to that size. It just happened.

Biggest missed opportunity: I would say the biggest missed opportunity for HFA over the years has been our reticence to talk about mental health. We didn’t want to appear to be an expert in that area, and we’re not an expert in mental health. We can provide resources, but I think with our history of this community, that we should have talked about mental health, and now we brought it to the forefront. Over the last year and a half, we’ve focused on mental health, and we provided resources to this community. We’ve looked at everything from gratefulness to suicide prevention to mental health first aid. We’ve done a great job over the last year-and-a-half. I think not focusing and not talking about mental health was truly a missed opportunity because our community deserved it and they needed to talk about their shared history.

Like best about the job: I like that I’m making a difference and I get to talk to a lot of people in this community. I talk to a lot of community members. I talk to a lot of leadership in this community. I talk to other leaders of rare disorders, and it’s been wonderful knowing that the decisions you make and the offerings that you have make a difference in this community. It feels good when people say, “I love that session. That was so good. I was having that same issue and you just explained it so well. And now I can go back and think about what I want to do.” That’s what I like. I like that community response to HFA. We just want to do what’s right for this community and make a difference. I love working with the team at HFA there. They’re wonderful. And they’re very dedicated. There are so many things that I like about this job, and it all focuses on the bleeding disorder community and how we’re able to serve.

Like least about the job: I can’t ever seem to catch up on my work. There’s more work than I ever can catch up on. That’s the thing I like the least about this job. It’s funny because when I’m doing one thing, something else is falling down and I’m sure a lot of leaders in the rare community can relate to this. If you’re focused on the administrative things, fundraising falls down. If you’re focused on this, something falls. Luckily, I have a good team around me, but I wish I could catch up. I’ve only been in the CEO position since January of 2020. It’s only been a year and 10 months and I’ll get the hang of it.

Pet peeve: People who say I’m too busy. That has always been my pet peeve. I don’t know why that bothers me so much, but when people say, “Oh, I’m too busy,” you’re never too busy to serve. You’re never too busy to provide great customer service. I find a lot of times the people who say they’re too busy are not as busy as the busiest people I know. That is definitely my pet peeve. You’re never too busy to serve others.

First choice for a new career: I’m not far away from retirement. What I would like to do is just write books, teach, and maybe do some coaching or consulting, and just be semiretired. That might be my new career choice moving forward. But I like what I’m doing. I’ve worked in the nonprofit industry for 18 years and I love every day of working in the nonprofit industry. It’s a good life. It’s a good job serving others. My new career would be just giving back and conveying the things that I’ve learned over my career. That’s what I enjoy doing. That’s blue sky, though.

Personal Taste
Most influential book: There was a book I read when I was working on my master’s degree a long time ago—How to Work a Room by Susan RoAne. It tells you how to work a room because you think people have some magic pill, or they’re just adept at working a room. It is a learned skill. The book influenced me to becoming a fundraiser not long after that. It helped me to be comfortable in any situation. I would encourage anyone to read it. As a matter of fact, we brought our board together right before our annual conference one year and I did a presentation on How to Work a Room. Several people didn’t realize there are tricks and skill to this. It helped them work the rooms that they were in as volunteers during our annual meeting. It’s an older book, but it was very influential for me.

Favorite movie: Anything Star Wars

Favorite music: Anything Stevie Ray Vaughn

Favorite food: Salsa and chips. Would that be considered food?

Guilty pleasure: I’m not guilty at all about this, but frozen margaritas.

Favorite way to spend free time: I love to read, travel, and spend time with my family.