Rare Leader: Tara Zier, Founder and CEO of the Stiff Person Syndrome Foundation

The Basics
Name: Tara Zier

Title: Founder & CEO

Organization: The Stiff Person Syndrome Research Foundation

Social Media Links:

Disease focus: Stiff Person Syndrome (SPS) is a rare neurological disease with autoimmune features. The severity of SPS varies widely. It can limit mobility severely as well as interfere with daily tasks. Some patients rely on wheelchairs, and some are bedridden. The most common symptoms are muscle rigidity and a sensitivity to stimuli such as noise, touch, and emotional distress which can set off muscle spasms. If this happens in open spaces, people can freeze like a statue, face-plant, and fall. This can lead to a fear of leaving the house and isolation. The muscle spasms can be so severe they break bones and result in life-threatening breathing problems. There are no good treatments. There is no cure. Middle-aged women are impacted most – around 75 percent; but toddlers, teenagers and men can suffer from SPS as well. SPS is often misdiagnosed as MS, Parkinson’s disease, or psychological disorders. It takes on average seven years to diagnose.

Headquarters: Bethesda, Maryland

How did you become involved in rare disease: I have one. And it was around my third neurology appointment when Dr. Scott Newsome told me Johns Hopkins had recently applied for a grant from  NIH for research but was denied because there wasn’t enough research to get the grant. “What??” I stared at him in disbelief as I sat in a chair in debilitating pain, feeling like a vice was cinching down on my neck, with a progressive rare disease and no good treatment options available. It was crystal clear to me at that time. There was no foundation to raise dollars for research. So I started one.

Previous career: Dentist until 2017 but stopped due to the condition.

Education: B.S. in Biology from Virginia Tech, D.D.S. from VCU School of Dentistry, General Practice Residency Pitt County Memorial Hospital

The Organization
Organization’s mission: The organization’s mission is to raise awareness and funds for research for better treatments and a cure for Stiff Person Syndrome.

Organization’s strategy: We have a patient-centered strategy focused on our mission. We raise awareness to educate the public and medical community about this disease to shorten the diagnosis time. We do this by utilizing our website, social media platforms, and monthly newsletters where information is shared and the SPS patient voice is amplified. Our website houses an “Ask the Neurologist” section where we include interviews from multiple neurologists who are experts in the field sharing their knowledge. Our newsletters include patient interviews called “Voices of SPS” where patients share their stories. We are generating global awareness featuring patients in the U.S., the U.K., Greece, Africa, and Australia. We’ve also been featured in many local and global publications including my alma mater VCU School of Dentistry, along with The Washington Post, Bethesda Living, Kensington neighbors, and The Advocate of Australia and continue to seek out these opportunities. With our ultimate goal of finding a cure for SPS, we focus on raising money for research. We are currently funding phase 1 research at Johns Hopkins University for biomarker discovery and are strategizing the best ways to push SPS research forward globally.

Funding strategy: I look at this as two-fold: how the organization generates financial support and how our organization funds research. We generate financial support by focusing on our networks to build our recurring donations and also hold fundraisers, which have been effective in raising money for research. Last year we applied for our first grant from the Rare As One Network through the Chan Zuckerberg Initiative (CZI) and we got it. One benefit of the grant is funding for our organizational infrastructure for the next three years. We will continue to do our grassroots fundraising for research projects and apply for additional grants to support our growth and other research opportunities. Our current funding strategy for research has been to fund projects that will push the science forward and ultimately lead to better treatments and a cure for SPS. I have met with top researchers for this condition to gather data to help determine where the funding is best served. We are committed to working with researchers who are fully transparent with their research and interested in collaborating with our organization to move the needle forward.

What’s changing at your organization in the next year: A lot. It feels like a volcano erupting. Action and planning for our future success will happen this year which is super exciting. Getting the CZI grant was huge. Along with financial support, they are providing specific training necessary to develop a solid foundation and sustain a successful organization. Another extremely valuable benefit from CZI is the Rare as One Network where we learn from other rare disease organizations. This grant will allow us to hire the necessary people to accommodate our growth. We will also put a plan in place for building a patient registry and natural history studies to better promote and support patient-focused research, and plan for an international symposium centered around our disease focus. At the same time, we are developing our Medical Advisory Board which will include members focused on research for SPS. This will keep us better informed on what research is happening and also will allow us to be eligible to become a member of the National Organization for Rare Disorders, or NORD. By joining NORD, we will be connecting to the major influencers in the rare disease community, be privy to pressing policy issues, as well as educational and promotional opportunities.

Management Style
Management philosophy: My management philosophy is promoting a healthy work environment. To me, healthy looks like an authentic, collaborative, forward-thinking place where people feel valued. Conflicts will arise, and when they do, it’s how you handle them that is key. I believe in direct, professional communication. I believe that not everyone will be a good fit for the organization. I am able to recognize this early on and either not bring someone on or let someone go based on this. I am open minded, encourage feedback and take responsibility for my actions. People make mistakes. I believe if someone’s intentions are good, this is easy to own and move forward quickly so that we can be productive as a group. I believe in overcoming obstacles by asking questions. When someone says they need to think about something before moving forward, ask “Why?” I also believe systems are key to have things run smoothly.

Guiding principles for running an effective organization: Our guiding principle is to have a clear mission and targeted goals. The mission is why we do what we do. The targeted goals have deadlines and deliverables that are attainable. We provide training and development for the team. I believe that’s paramount for success. We also believe that building alliances and partnerships is critical in recruiting team members and outside entities that can support the mission. Our drive for improvement is constant. We are committed to having a transparent financial picture so all can observe how the income and expense statements compare to the organization’s goals and objectives. We believe in community agreements to give clarity on what to expect. An example is starting and finishing on time for meetings. Everyone agrees and is held accountable. Knowing how to delegate demonstrates trust and empowers your team. We strive to be good communicators which means knowing how to listen, staying open to feedback, and making sure your team knows they are valued. Finally, we have fun. It’s important to take the time to laugh, enjoy each other, and have periodic retreats to bond.

Best way to keep your organization relevant: To keep our organization relevant, we must always have our mission at the forefront of our brains and our actions. And there must be a sense of urgency with all of our agendas. People are disabled from this condition. Most can’t work. Many deal with major financial issues. Every day that people suffer from this disease is one day too many.

Why people like working with you: People like working with me because I strive for excellence in everything I do, I’m open and encourage feedback, I like to have fun, and I like to go big. I choose to work with like-minded people, so it works well, and we get results. And most important, I value and appreciate my team. I believe when people feel valued and are having fun, they enjoy working and are most productive.

Mentor: I have several mentors. Finding someone who does something well that you want to do and modeling that person is, in my opinion, the best way to go. Why reinvent the wheel if you don’t have to? I worked with one of Tony Robbins consultants years ago and adopted some of the communication skills from his “Power to Influence” trainings. These have proven to be very valuable personally and professionally. Dr. Tom Winkler was my mentor when I was a young practicing dentist. I worked with him for years and learned a lot to better serve my patients. For running our nonprofit, I connected with Marcia Smith, who is the executive director of the Mowat-Wilson Syndrome Foundation. She is gold. She has helped me tremendously with the organizational structure and has a wealth of knowledge. I am extremely grateful for her.

On the Job
What inspires you: People who believe in something strongly enough to do whatever it takes to make something happen. To run a nonprofit for a rare disease, support it, and conduct the research to cure it, requires many people with different skill sets. Seeing these people who are that passionate and that committed inspires me. David Fajgenbaum who wrote Chasing My Cure, is a prime example. Anyone working in the rare disease space needs to read that book.

What makes you hopeful: What makes me hopeful is knowing that anything is possible. Raising awareness for a rare disease is possible. Making people care about a rare disease is possible. Finding better treatments and a cure for a rare disease is possible. What Priscilla Chan calls “audacious optimism” is a key mindset.

Best organization decision: Aside from starting it, applying for the Chan Zuckerberg Initiative grant.

Hardest lesson learned: Don’t take it personally if people aren’t interested in your mission. Not everyone is going to be. This has been a tough one. Sometimes the people you thought would definitely be supporters aren’t. And other people you would never imagine are. Focus on the ones who are.

Toughest organization decision: It’s a decision I face every day. Can I continue to run the organization and be mindful of my health? I’m afflicted with this disease and stress exacerbates the symptoms. I don’t do things half-way and tend to push the envelope. For me to continue to run this, I have to have balance. I’m continually dancing on that line.

Biggest missed opportunity: When we originally set up the foundation, we had two options. Either set it up as a private foundation or public charity. At that time, we thought we were going to have a benefactor, which would put us in the private foundation category. So, we set it up that way. Ultimately the benefactor didn’t pan out and we were operating like a public charity. We had a donor who wanted to donate $25,000 through a donor-advised fund and we were unable to accept it because we were a private foundation. We’ve now converted to a public charity, but it was painful to miss out on that opportunity.

Like best about the job: What I like best about my job is giving hope to people who have felt hopeless. Reading the messages, getting the calls. It makes me feel like this is all worth it.

Like least about the job: It’s never done–ever. I force myself to go to bed with still a gazillion things left to do.

Pet peeve: Complaining and negativity. I can’t be around it. It drains me and there is work to be done. I have to surround myself with people who look for opportunities instead of roadblocks and focus on the good and how to improve.

First choice for a new career: If there was a cure for SPS today and no need for the foundation to exist, I would still work in the rare disease space because it needs so much support and I find it immeasurably rewarding.

Personal Taste
Most influential book: Mindset: The New Psychology of Success by Carol S. Dweck. This book changed my life. It made me realize that I wasn’t where I wanted to be in certain aspects of my life because I didn’t deserve to be there; I hadn’t put in the work required to get there. That has allowed me to enjoy the process and eliminate any sense of entitlement.

Favorite movie: Good Will Hunting

Favorite music: Dave Matthews Band. They played in Richmond when I was in dental school before they got big. We used to go see them every Wednesday night. Happy memories.

Favorite food: Sushi. I could eat it every day.

Guilty pleasure: Tortilla chips and guacamole. I can easily eat a large bag and bowl of guac in one sitting.

Favorite way to spend free time: I love my “family nights” with my kids where we all play a game like scrabble. It gets pretty competitive, especially with my son. I also love watching my daughter play soccer. She’s been at it since she was 4 years old and is now playing in college.