RARE Daily

Rare Leader: Sarita Edwards, Founder, President, and CEO of The E.WE Foundation

August 4, 2022

The Basics
Name: Sarita Edwards

Title: Founder, president, and CEO

Organization: The E.WE Foundation

Social Media Links:

Disease focus: Edwards syndrome, also known as trisomy 18, is a rare genetic disorder caused by the presence of a third copy of all or part of chromosome 18 which causes abnormal development in many of the baby’s organs. According to the Centers for Disease Control and Prevention, there are an estimated 1,187 babies affected by trisomy 18 and most are female. Individuals with trisomy 18 often suffer from intrauterine growth retardation and subsequently, low birth weight. Some features of trisomy 18 include having a small, abnormally shaped head, small jaw and mouth, cleft lip and palate, clenched hands and fists with overlapping fingers, rocker bottom feet, groin hernia, birth defect with intestinal organs outside of the body, kidney defects, heart defects, low-set ears, single line palms and drooping of the upper eyelid. There is no cure or treatment for trisomy 18 and many babies don’t survive past the second or third trimester of pregnancy. Only five to 10 percent of children with Trisomy 18 live past their first year of life but with severe intellectual disabilities.

Headquarters: Huntsville, Alabama

How did you become involved in rare disease: I got started in rare disease after receiving a prenatal diagnosis for my son Elijah around 22 weeks. We learned that Elijah had Edwards syndrome, which is commonly known as trisomy 18. It is a rare, genetic, chromosome abnormality. That started our advocacy efforts. We were told that Elijah would pass away in utero, during the delivery process, or shortly after birth. Like most families, we started fighting for his care and for services for him. When Elijah turned 2 years old, we decided to start the foundation. There were so many gaps and challenges that we were facing as a family. We wanted to see how we can try to eliminate some of that for other families. We felt that starting a foundation was the best way to do that.

Previous career: Department manager in healthcare operations and administration for a contract services provider to hospitals

Education: Bachelor of sciences in Health Services/Allied Health/Health Sciences from Athens State University / University of Alabama, Health Services/Allied Health/Health Sciences. Certified in seizure first aid and mental health first aid.

The Organization
Organization’s mission: Our mission is to provide resources and support to families affected by trisomy 18. We also want to change the medical perspective about how healthcare systems look at trisomy 18. We do that through efforts of advocacy, education, and public policy.

Organization’s strategy: We currently have three programs that we offer. We have our Leap program, which is a community resource program. We create learning and education opportunities for families. Healthcare professionals and social services workers can also participate in those programs. We are a continuing education provider. That incentivizes those healthcare professionals to attend those events. We have our Zebra program, which is also a resource program. It focuses on comfort care, mental health, bereavement, and end of life solutions because trisomy 18 is medically termed “incompatible with life.” We know statistically only 5 to 10 percent of babies diagnosed with trisomy 18 will live past their first birthday. So that is a comfort care program that we offer for the community. And then we have, our Stripe program, which is an economic assistance program. It’s for our trisomy 18 families who are experiencing financial hardship. That’s our strategy to achieving our resource     and support goals. We also have a resource tab on our website where we share many of our community partners. We have organizations reach out to us to have their resource added to that page so that our families know that they exist. In terms of our goal toward changing the medical perspective, our strategy is to build relationships with healthcare professionals and to have conversations with them to show trisomy 18 is looking different for a lot of families. And then in terms of public policy, we push legislation.

Funding strategy: A lot of our funding comes from grants.  We receive donations. We receive anonymous gifts from people who see us out and about and they just send blind checks to our PO box. Our funding strategy is to apply for a lot of grants that can help us meet our goals. Then we separate everything. We have our general fund that covers the day-to-day operations. All of us are volunteers. We don’t have the cost of salaries, but we do, of course, have day-to-day operations, your website, and different things like that. And then we have our program funds, and we allocate those based off how those grants are received and how those donations are received. People tell us how they want to use them, how they want us to allocate those donations.

What’s changing at your organization in the next year: In the next year we’re expanding our programs. We’re trying to figure out how can we better engage the patient community. We know that the community is looking for the information. We know that they’re finding our content, but we’re looking to see how we can better engage them. We are expanding those efforts and we’re starting conversations about research. We’re looking at the viability of research because it’s a chromosome, abnormality. We’ve just started the conversation to see if exploring research is a viable option for what trisomy 18 is. Over the next year, we hope to have a better hold on understanding our research possibilities, but then also increased patient engagement.

Management Style
Management philosophy: The first thing is understanding that I don’t have to do it all myself and being open to letting people help. It’s important to me that we make our expectations clear in terms of volunteer support and managing people who are willing to assist us.  It’s important to me that our  expectations are clear. We don’t want to waste time. It is okay to set timelines and it’s okay to follow up, that helps people be accountable, and to be realistic with our goals and the outcomes that we’re looking to achieve.

Guiding principles for running an effective organization: I would say at the forefront is remembering why we got started. We could have been rare parents from the sideline. I would say our guiding principles are to remember why we crossed over into the space of starting a foundation and why it became so pressing and important for us to try to create something that could prevent other families from the challenges that we faced. Remember the goals that we want to achieve and the people that we’re trying to reach and target.  It’s important to communicate and be transparent and open about the why and the goals, and how we’re using their funds. I would say those are our guiding principles as an organization.

Best way to keep your organization relevant: You have to stay plugged in. You have to stay engaged in order to stay relevant. You have to do that with patient communities, but you also have to do that with other organizations. The community and the advocates need to know that you’re here. They need to know what services you’re bringing to the table. But in order to stay relevant, you have to have relationships with other organizations too. People have to know that you’re here and that you’re not afraid to get your hands dirty to get the job done.

Why people like working with you: I’m authentic. Sometimes I’m raw. I’m not afraid to address the elephant in the room. I think people like working with me because what you see is what you get. I don’t try to be something that I’m not. I’m totally cool with who I am. And I think being genuine radiates, and people find value in that.

Mentor: My mentor is a former nurse manager that I had. Her name is Amy Carr. She was my office manager before I ever graduated college. I started working at a hospital. She was just one of those people who was amazing. She taught me a lot of healthcare skills before I was ever academically qualified to do them. She held me accountable when I was slacking. And to this day I value her and everything that she taught me. I would say she was my greatest mentor professionally. And then, just in our everyday lives, I would have to give that credit to my grandmother,  Viola McCray. She is my rock and my support, and I know she always has my back.

On the Job
What inspires you: What inspires me on the job is the work that we do, the people who I have the opportunity to meet, the impact that I believe we’re making, I’m tremendously inspired when someone tells me that they have accomplished something, or they’ve learned something that they didn’t know, but was looking for, from something that our organization put out or some level of content that we gave. It inspires me to work with people and meet people and get feedback that what we’ve produced has helped a family or someone in the healthcare space. That’s what inspires me the most.

What makes you hopeful: I’m hopeful that one day we will know more about trisomy 18, more than we know today. And I’m hopeful that I have played a part in that happening.

Best organization decision: The best organization decision for us has been making the decision to start the foundation. Initially we toyed with the idea. We reached out to other organizations to see if we could support their efforts and realized that starting one was going to be the best thing for us.

Hardest lesson learned: The hardest lesson learned was that buy-in about what you’re doing doesn’t come quickly, nor does it come from the people you think it might. That’s been the hardest lesson, just getting that buy in from a lot of people. Because of the challenges with trisomy 18, a lot of people run away from wanting to touch “changing the narrative” or efforts toward changing the narrative. The hardest lesson for me is accepting that everybody isn’t going to be interested immediately. It takes time to get buy in from folks.

Toughest organization decision: The toughest decision has been denying a financial assistance request. We had to deny a financial assistance request because we do a lot of work to verify them and this one seemed fraudulent. As much as we wanted to believe that it was a real family needing help, nothing lined up. We had to trust our judgment and our accountant, and everybody involved, and we had to deny it. That was super hard.

Biggest missed opportunity: Our biggest missed opportunity was the opportunity to apply for a state grant and we didn’t feel like we were ready to apply for it. A lot of the things that they asked for didn’t apply because we had not made it to that point yet, or we would’ve been cramming trying to get a lot of it together. To date, we feel like that was a missed opportunity, but it helped us focus and refocus. We will be ready for it next time.

Like best about the job: I love the people that I come into contact with the organizations that I meet, and the opportunity to network and collaborate. That’s what I love best.

Like least about the job: What I like least is that sometimes it seems like the work is never done. Whenever you feel like you’ve reached a stopping point, or  things looks perfect, you find another family, or another resource that can be added, or something that can be changed. What I like least is feeling like the work is continuous and that sometimes I feel like we’re not getting any steps further than we were the last time we looked at it. 

Pet peeve:   In terms of nonprofit work, I would say my pet peeve is this spirit of competition. I have seen some organizations that don’t want to work with you because they feel like you’re their competition rather than seeing you as an opportunity to network and collaborate for the overall patient community. That’s my biggest pet peeve: missed collaborations because of competition.

First choice for a new career: One of my long-time, professional goals was to be CEO of a hospital. If I could choose something else, I would become CEO of a hospital. that’s something that I’ve always wanted to do.

Personal Taste
Most influential book: The Bible

Favorite movie: My favorite movie is the Matrix Reloaded. That was the movie that my husband and I saw on our first date. Then I would have to say Encanto because that’s the current movie that my children and I absolutely love.

Favorite music
: I like anything positive and encouraging. We listen to all genres of music, as long as it’s positive and encouraging. I’m pretty good with it.

Favorite food: The one thing that I absolutely love is Honey Bunches of Oats with almonds cereal with 2 percent milk. That is my absolute favorite. I could eat it every single day.

Guilty pleasure: Mocha cookie crumble from Starbucks.

Favorite way to spend free time: Free time is with my husband and my kids watching a movie. That’s perfect for me.





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