Rare Leader: Dawn Ireland, President, CDH International
October 18, 2018
Name: Dawn Ireland
Organization: CDH International
Disease focus: Congenital diaphragmatic hernia is a birth defect that occurs when a baby’s diaphragm fails to fully form. The organs in the abdominal cavity migrate into the chest cavity, and the lungs don’t have room to grow. It’s very severe and about 50 percent of infants do not survive. It is technically rare by NIH standards, but it is on the common end of the rare spectrum. It has the same occurrence rate as cystic fibrosis and spina bifida, but it’s not well known. We don’t know what causes it. We’re hope that it will be discovered within the next two years.
Headquarters: Wake Forest, North Carolina
How did you become involved in rare disease: In 1993, I had a little boy who was born with undiagnosed diaphragmatic hernia. I had ultrasounds up into seven-and-a-half months within the pregnancy, and it was never found. He was born in Virginia and flown to North Carolina when he was six hours old. He spent his first 10 months in a PICU. He had two surgical repairs, multiple blood infections, four bouts of pneumonia, and came home on full ventilator support, oxygen, feeding tube, blind and deaf from lack of oxygen during one of the bouts of pneumonia. It was a very complicated case of CDH. It was not typical at all. My ex-husband and I fought to bring him home, and it was quite an uphill battle because we were very young at the time. In 1993, there was no Google, so we couldn’t look up anything. There was no organization that even had a brochure on what this was. At the time, March of Dimes didn’t offer diagnosis information. There was no place for us to turn. I spent every hour in the medical library at the university, trying to look it up, trying to figure out what was going on with my son, trying to find options. I met one other mom in the hospital, whose son was born a month-and-a-half before mine, and between the two of us, we knew nothing. But, we were support for each other and we’re still support for each other to this day, 25 years later. When my son was two years old, and stable at the time, on my kitchen table with the typewriter, we created, we founded what was then called CHERUBS [later CDH International]. Her son, Preston, never left the hospital. Preston passed away at two months old. My son passed away in ’99. I know what it’s like to be both a survivor and a grieving parent. He was my only child and that’s just how things worked out. Now I have 6,300 children that we work with in CDH International. I’m very proud of all my kids.
Previous career: I wanted to go to med school. I was pre-med, and my son came along. We were still newlyweds and so young and so my dream went on hold. I ended up in the medical world though I never went to med school. After my son was born, I saw it from the patient side. I didn’t want to be on the physician side. I would be too emotionally involved, at that point, with every patient. I wanted to be an advocate. I knew that that’s what I wanted to do.
Education: Nonprofit management certification from Duke University
Organization’s mandate: We serve everything to do with this birth defect. We work with families in 70 countries now. Right now, our mandate is to serve these families as best we can with as many services as we can afford to offer them, and to continue research, and to work with other research organizations and universities to find the cause and the best treatments for CDH. We always set out to do three things: research, advocacy and support services for families. We’re continuing to do that.
Organization’s strategy: To be honest, we had no strategy. We just started writing letters to hospitals to see what we could do. Everything that we’ve done over the years has been trial and error and dictated by what the families need from us. The research database started in ’98, because there was no patient database that was being kept for these kids. The surgeons had a database where they were tabulating information from the post-surgical period, the neonatal period, but no one was looking at the full history of the families. Currently, we are working with NIH, and we are also working with Columbia University, and the University of Utah. There’s a CDH study group made of surgeons that is headquartered in Texas and I’ve been a part of that organization for 20 years now. We’re also part of Global Surgery Initiative, to try to help create OR’s in countries that don’t currently have pediatric OR’s. We’re also working with the EU. We are in the process of getting NGO [non-governmental organization] status into two European countries so that we can work more closely with them. We’ve started to work with the World Health Organization. Our big goal right now is to create a standard measurement of mortality and morbidity for these patients, which frustrating enough is still not in existence in 2018.
Funding strategy: We are mostly funded by grassroots fundraisers, helped by families, and direct donations. We have one foundation that funds a lot on the research side. On the family side, we have conferences for families. We have one in the U.S. every other year, and then one in Europe every other year. Lots of online services for families, care packages, financial assistance grants. We’re hoping to create a funeral assistance grant very soon. In the past, we’ve given scholarships to patients, or for parents who have gone back to school, and want to continue that. We have no government funding. We have no other grants. We just hired our first grant writer. We can stretch a penny at this organization, but these kids need a lot more money. The research institutes need a lot more money.
What’s changing at your organization in the next year: Next year we’re opening doors in two European countries. That’s a big leap for us. Then, hopefully, we’ll be employing three more people at our main office. Currently, we only have two full-time employees, and two part-time. We’re hoping to double the employees. The U.K. is one. But because of Brexit, we can’t put our eggs in the U.K. basket. We’re getting an NGO status in another European country as well. We don’t want to be excluded from EU research.
Management philosophy: Keep moving forward. Keep thinking big. We have a small budget and small office in a small town in North Carolina, but every day we wake up with the weight of responsibility of thousands of kids on our shoulders. If we think small, we’re not going to save any lives. I was a 22-year-old mom of a disabled kid who lived in North Carolina and decided to start a charity to help other parents. I never thought it would get this big. I never thought that we would be doing the things that we’re doing but they have to be done. Our philosophy is to see what has to be done and do it, because no one else is going to.
Guiding principles for running an effective organization: Have a foundation built on respect for patients, honesty, and a good work ethic. Build things from nothing on a strong foundation that is built on the desire just to help. That’s the biggest advice that I give to the organizations that I mentor. Don’t ride on anyone else’s coattails. Don’t step on anyone else’s toes. Don’t try to borrow ideas from other people, unless you’re respectful and ask for permission. Don’t try to reinvent the wheel. Don’t try to do something that another organization is already doing. Bring new, innovative, and original ideas to your community that will help the patients and bring more to the table for the cause. We’ve continued to try to do that, and mentor other organizations to do that so we can all help these kids.
Best way to keep your organization relevant: Don’t stay still. We’re always trying to figure out what the next thing is for awareness. What social media is new? What is the trend? Is it a ribbon? Is it a banner? Or is it a march? What is the next big thing and how can we work on that as a community so that the parents are excited and involved? I’ve always told the families that there’s nothing that I won’t do to try to raise awareness because without awareness, you can’t get funding, and without funding we can’t raise awareness.
Why people like working with you: I don’t think it has anything to do with working with us. I think people just want to help these children, and that’s how it should be. They see these children, who aren’t getting the help they need, these families who aren’t getting the help that they need, and they just want to help. Who doesn’t want to help critically ill, newborn babies? They’re the most helpless creatures in society, and it’s hard to turn away. We just have to let the world know that these kids are here.
Mentor: I never had one. I never had anyone to ask how we did something for the first many years. Now, for the past year, in the rare disease community, Nadia Bodkin. She’s been an amazing mentor to me in the rare disease world because we’ve not been a part of this world, except for the past about two years. I adamantly would not be part of the rare disease community because I thought that was labeling our kids as too rare, when CDH is so common. That is one of my biggest regrets as a charity leader—that we did not get involved in this community sooner. We met at an orphan drug conference last April in Washington, D.C. We happened sit down near each other for dinner, struck up a conversation, and in about 10 minutes it was like, “All right, we’ll be working together forever.” She has taught me so much about community, so much about research that I didn’t know. She’s always willing to give out experience and guidance. She doesn’t hoard information. there’s not a competitive or dishonest bone in her body. She just wants to help everyone. She’s the most generous person I think I’ve ever met, and the strongest I’ve ever met as well. She’s amazing. I’m so grateful to her.
On the Job
What inspires you: I wake up every day trying to make my son’s memory proud and trying to save another family from going through what mine did.
What makes you hopeful: These kids can be fixed. It’s not a lost cause. Half these children survive. Why is it not 100 percent? If we can get that far, why not all of them?
Best organization decision: We’ve had two. The first was seven or eight years ago, we restructured our board. We had a board of moms, and dad, and grandparents, and survivors. We became stagnate because everyone was so emotionally entwined. It was very hard to run the business side of the charity. We weren’t growing, and it was getting frustrating. They just wanted to hold everyone’s hands, and not grow the organization, and fund research. Everyone has just a huge heart, but we needed to grow. If we were ever going to stop CDH, we had to grow. We restructured the board, and took all the parents off, except for one, who was also a researcher, and myself, because I was the president. We put them on a parent advisory board. They continue to do all the things that they love to do, holding their hands of the families and supporting them, and being a part of that whole division. But, then we brought in business owners, who were local, who knew the charity, had sponsored us in the past, worked with us, and who wanted to help these kids, but who would be able to run the business side so that we could grow.
The second decision was last year. We were holding hands with families, doing a great job, but that wasn’t going to save a single kid. We had the database and were doing good with that, but it wasn’t enough. I said, “I want to restructure us into a research organization.” I was in charge of everything at that point. I was still helping the families. It was pulling away from research. Research was pulling away from the families. I was pulled too thin. I was burning out. I’d been to too many funerals, and too many bedsides. I just needed a break. One of the doctors made a random comment at a lunch meeting about needing an impartial entity to accredit hospitals and push for standardization of care. That off-hand comment became the seed for our reinvention. We renamed the organization, CDH International. We broke it off into three separate departments. I was no longer the president of CHERUBS. CHERUBS is now a department under the charity. There’s a president over that. She has all our support. She also watches over the volunteers and does so much more. We have an awareness department, and then we have a research department. Now, instead of being in charge of the whole thing, I’m just in charge of the research department. I have a full-time focus on research now. Changing the name from something like CHERUBS, which is a cute, warm and fuzzy, mom-and-pop charity name into CDH International’s made a huge difference. Branding is so important. That’s one of the biggest things I tell people when they want to start a charity. Branding is everything.
Hardest lesson learned: I’ve been doing this almost 24 years and I love my job. I love what we do. I feel like this is the reason why my son lived and died. My faith tells me that, but it’s not easy. There’s nothing about running an organization that’s easy. Many times, I have sat down people who have asked me about starting charities, and I asked them, “Are you prepared for all the dark side of it? It’s not all money on trees. You have to go out and earn it and hear the 99 “Nos” for every “Yes.” Can you handle that?” It can be heartbreaking, and it’s very hard. You know, there’s a very tough outer shell. Are you prepared for the first time you have to tell someone no? And then you have gone from angel to devil in their eyes in a millisecond. And are you prepared for the social media dark side of running the charity? And, all of the competing Facebook groups, and all that drama? It is not an easy job. It’s not what you think it is when you sign up for it. It’s not all research, or all conferences, or all patient bedside care, or helping families. It’s a much bigger, complicated, interweaving web that I never expected.
Toughest organization decision: Breaking out the parents from the board. That was hard. Those were people that I loved and worked with years. We held each other’s hands with our kids. That was very hard.
Biggest missed opportunity: Not hiring a grant writer or fundraiser sooner. Not having the funding to do that. Not focusing on that at the beginning. I never realized how important money was. That sounds naïve, but I just wanted to help the families. I really wish we had set it up to have had that the first year, and everything would have been so much easier, and we would’ve been so much farther down the road than we are now.
Like best about the job: I have gotten to watch kids grow up, and have kids of their own, graduation invitations, and birthday party announcements, and wedding invitations, and I get to be a part of all these lives. For me, as a grieving mom, I get to see my son through their eyes. These are my kids now. That’s been such a blessing to me.
Like least about the job: What I like least is the money part—fundraising. I am not good at fundraising. That is the worst part of the job to me.
Pet peeve: The fact that we have to be on social media, because we have to raise awareness, but it’s just a time suck. It’s just drama.
First choice for a new career: Epidemiologist.
Most influential book: The Art of War by Sun Tzu
Favorite movie: It’s a Wonderful Life. I like the movie because it shows what a direct impact everyone has on the world.
Favorite music: Top 40
Favorite food: Italian
Guilty pleasure: Scrapbooking and genealogy. I’m addicted
Favorite way to spend free time: With my family
October 18, 2018
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