The Basics
Name: Tuesdi Dyer

Title: Executive director

Organization: CFC International

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Disease focus:  CFC syndrome is a rare genetic condition that typically affects the heart, facial features and skin. It is seen with equal frequency in males and females and across all ethnic groups. Children with CFC syndrome may have certain features that suggest the diagnosis, such as relatively large head size, down-slanting eyes, sparse eyebrows, curly hair, areas of thickened or scaly skin, and short stature. Most will also have a heart defect. While there is a wide spectrum of severity in CFC syndrome, most individuals will have some degree of learning difficulty and developmental delay.   There are several characteristic facial features that are evident in CFC syndrome that may overlap with other conditions, particularly Noonan syndrome and Costello syndrome. Therefore, accurate diagnosis is essential for proper medical management. 

Headquarters: St. Petersburg, Florida

How did you become involved in rare disease: My son has the disease. He has CFC syndrome. He was diagnosed five years ago when he was just four months old.

Previous career: I was involved in nonprofit management for 20 years

Education: B.A. in political science Texas A&M.  Certified fundraising executive

The Organization
Organization’s mission: Our mission is to advance the research and treatment of CFC syndrome

Organization’s strategy: Our strategy is to work with researchers throughout the United States and internationally to identify the key areas where we’re able to advance research. For example, right now we’re trying to advance research on seizures within individuals who have CFC syndrome. We’re also providing a very supportive network to our families because we are a rare disease. We know that CFC International becomes an extended family for our families. We work together to make sure that we can provide and meet the emotional, and sometimes even medical and some of the financial needs of our families who are facing challenges that are related to raising a child who has the syndrome.

Funding strategy: Our funding strategy is purely community funding-based. We raise on average anywhere from $40,000 to $60,000 a month.

What’s changing at your organization in the next year: The major change we are experiencing is that we’ve tripled our operating budget. I took the position a year ago and my goal, working in conjunction with the board, was to triple the budget to be able to fund research, as well as meet some of the extended emergency medical needs of our families and continue to do our family medical conference. We set a goal to do a one in a million campaign to raise $1 million in one year.

Management Style
Management philosophy: We have two staff members. It’s me and another part-time staff member. I’ve always been in very large organizations. I’m trying to think about delegation and that opportunity to provide leadership to other people who are coming on board as staff members within the organization. My management strategy, I would say at this point, is to surround myself with people who are amazing, do amazing work, and are amazing leaders so that the organization as a whole grows and has a position of positive visibility.

Guiding principles for running an effective organization: This is the first time I’ve worked for an organization that is so uniquely personal to me. My guiding principles often become blurred. As a nonprofit professional for a very long time, my guiding principles have always been about servant leadership, being in the background making the organization look good, and making the other leaders around me look good, so that everyone wins. I have that same sort of servant leadership idea within this organization, but I will say there are many times where I have to watch myself since that philosophy gets a little bit blurred because I want to step forward and make something happen quickly because it’s personal. It affects my son. There are many times when I have to say, “Okay.” I have to allow other people to build up the organization, move forward, and make sure everyone is on board with me and not move so quickly that I’m going beyond the limitations of what we think we should be doing strategically.

Best way to keep your organization relevant: We understand that partnerships are key. We try very hard to make sure that we are constantly linked arm in arm with the other organizations that we know. We can reciprocally serve. They serve us, we serve them, and we make one another stronger. That really is why the Global Genes partnership is very important to us. It’s why the partnership with our other RASopathies—we are part of the RASopathies Network, which is a collaboration of a few other rare diseases that are related to our disorder—is important to us. We make sure that we collaborate with one another well because we’re stronger in numbers. We know that in rare disease that means even more. Having 562 individuals living with CFC syndrome right now is not a lot. But when we can collaborate and we can be a part of a system of 12,000 individuals with disorders that are very similar to ours, we can grow and stay relevant and stay on the tip of research. We also have to have the buy-in of our families. The families have to feel like they know why we’re here and they know the benefit and the support we can provide them. It doesn’t really matter how relevant we become globally if our families don’t feel like we’re the backbone of research and treatment and helping their child have an opportunity at a high quality of life.

Why people like working with you: We are collaborative. We want to make sure that everyone feels heard in the sector. We do have that higher level of emotional intelligence and understanding that we have to have an equal position. When someone doesn’t feel like they’re able to contribute as much to the collaboration, we and all the other organizations have to reach in and build them up to make sure that we all have an equal part to play.

Mentor: I’ve had a lot of mentors and most of my mentors have been my bosses. All of my bosses had something unique to say to me throughout my life that I have never forgotten. I had a boss who once told me that it didn’t matter how smart I was. If I wasn’t emotionally intelligent, then I would never be a good leader. And that stuck with me forever. And he was right. Then I had a boss who told me you never back down. I mean, when you believe something or when the odds are in your favor the way a procedure needs to be carried out, don’t back down and feel as though you have to compromise if that’s the way it needs to be carried out. The best advice is from my most recent boss. She said, as an executive director, you’re going to get so many people ready and willing to give you advice and so many people ready and willing to criticize, or give you positive praise. No matter what, your simple response should always be, “Thank you so much for your notes.” I laugh about that because she’s just such an excellent leader in this community. I never think about anyone criticizing her as a leader because she has such a strong presence. But I realized that everyone is open to criticism. Recognize what piece applies to you, what piece doesn’t apply to you, and quickly move on.

On the Job
What inspires you: My son. He is five years old and he’s so amazing. Time with him just fills my tank. He’s happy and engaged and just a wonderful kid. And our families. I knew our families well before I became the executive director. I feel genuine love for our families. I feel genuine love for them. That hasn’t gone away now that I’m executive director. It’s amazing to wake up and to get an email from a mom of a family and just feel so happy she reached out to me because I have such strong affection and connection to her as a fellow mom with a child that has CFC syndrome.

What makes you hopeful: Every year we know that treatment for individuals with CFC syndrome is getting better. When my son was born, we were told he wouldn’t live past birth. And then when he lived past birth, we were told he only had a 3 percent chance of making it past the age of two, and of course now he’s five years old. I don’t necessarily always see that as a miracle, but what I do see that as is that treatment is advancing so much. There was a time that a kid like Emmett would be born and probably not live past the first week. And that was the expected outcome. And there was a time when a child like Emmett would be one-and-a-half and possibly have heart failure. That was the expected outcome, but it’s not anymore. And whenever I talk to a newly diagnosed family and they are afraid and I know that feeling because they’re scared and they’re bringing this medically fragile child home and they don’t know what to do with him or her, and then they just don’t know how they’re going to care for the child. I remember that. And I just think the odds are in their favor. And that’s so cool because there was a time when the odds weren’t in their favor.

Best organization decision: I would say our best decision was expanding our board of directors to be more global. It has been very hard for our board of directors to have a more international component because meetings are difficult when you have to do them at three in the morning to meet the needs of someone who lives in Germany. But we committed to doing that and we committed to making sure that we can be available because it’s important that voices from around the world are heard. And I love that the board agreed with that. And I love that we now have two board members who are international. It’s always tricky to make sure that we can get them on the phone, or that we can fly them somewhere. That’s an additional cost for the organization, but it’s absolutely been worth it to be able to give our international families a better board.

Hardest lesson learned: I can’t make everybody happy. I’d never had a problem with that in my previous job because it wasn’t personal, but now it is personal when a family is disappointed in the decision that’s made about the organization, it personally hurts because that family is somebody that is really personally important to me.

Toughest organization decision: The toughest organization decision has been to change the scheduling and platform of our family medical conference. To better collaborate with the other RASopathies we have decided we’re going to move our conference to the off years of their conference so that we can better participate in their conference. Right now, we have our events in the same year within one week of one another. We decided we’re not going to do that anymore. We’re going to move so that we can be better involved in their conference. Doing that means we’re not going to have another conference in the United States until 2022, which I know saddens our families. It’s going to be a hard blow in the beginning, but in the long range it’s the best decision.

Biggest missed opportunity: The biggest missed opportunity within our organization is probably not being as well prepared as we should have been to raise the amount of money that we have been raising. I’m often a person that comes in and acts now and apologizes later. The problem with that and raising money is that when you’re not properly prepared for that money to come in, you scramble to properly acknowledge your donors, and scramble to properly inform your donors about how the money is being used in their interests. We came out of the gate fast and hard on raising money and right out of the gate we raised enough money for 116 families to attend our family medical conference in July at no cost. That was great, but we did not have the infrastructure and systems in place to manage that. The good news is we’ve put all of the infrastructure in place that we needed. Should we be lucky enough to have that windfall again, we won’t be in that position again.

Like best about the job: I just love doing something that is for my kids. I love that my older son gets to see that I’ve dedicated my career to this for his brother. And I love that my child with CFC syndrome gets to see that I’ve dedicated my life to this for him. I feel like this is what I should have always done.

Like least about the job: What I like least about the job is disappointing families. I can’t always respond immediately when they need me to. I have to work really hard to keep from blurring the lines between this job and my time with my family. That means that sometimes I have to say “no” to our families and disappoint them. And when I do that, it hurts. But I have to keep my eye on the fact that this is also my job. And when the lines get blurred, my family suffers.

Pet peeve: When I take the time to make sure everyone is well informed of something, and then people ask me questions about the exact things I just told them.

First choice for a new career: In my second life I’m going to be an architect.

Personal Taste
Most influential book: A Moveable Feast by Ernest HemingwayFavorite movie: 10,000 Bedrooms

Favorite music: Dave Brubeck, big band jazz, Thelonius Monk, and indie rock, Radiohead, classical

Favorite food: Sushi

Guilty pleasure: Cupcakes

Favorite way to spend free time: I love when I’m with my friends and all of our children together.

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