Rare Leader: Lisa Rose, Executive Director, Hope for SCD


The Basics
Name: Lisa Rose

Title
: Executive Director

Organization: Hope for SCD

Disease focus: Sickle cell disease, a rare, genetic blood disorder that affects the hemoglobin and its ability to carry oxygen. It is a life-limiting disease.

Headquarters: Raleigh, North Carolina

How did you become involved in rare disease: I have three children who have three different rare diseases. We got involved with sickle cell when my daughter was born with sickle cell. It’s a rare disease, and on top of it, we are white, which is super-rare. About 99.9 percent of people with it are of African descent, maybe 2 percent Hispanic. I’ve found four other white families with sickle cell through social media.

Previous career:  I was a social worker.

Education: Bachelor’s degree in Psychology and Social Work from St. Martin’s University and Master’s degree in Education from the University of Phoenix

The Organization
Organization’s mandate: We focus on bridging the gap between pharma, doctors, business people, and the patients and families. We are focus specifically on education and translating all the crazy stuff the doctors give us into something we all can understand.

Organization’s strategy: Part of it is getting buy-in from the doctors that they need to appreciate what the patients have to say and getting the patients at the table. We also work with the larger stakeholders to understand what they are trying to accomplish so the patients can understand. A lot of people don’t understand adults learn different than children. All of the educational materials that are created in the medical world are created with the belief that adults are just older children. That’s not actually how we learn. A big part of what I try to educate the pharmas and doctors about is that we have preconceived notions about pretty much everything, and how that shapes our ability to take in new information. On top of that, we’re struggling with the diagnosis, so how that emotionally shapes our ability to take in information as well. And from the patient side, getting them to appreciate the value of getting out of the freak-out mode and into the education and advocacy mode. We all go through that process. After that part’s over, you have to move forward, and education empowers you.

Funding strategy: We got two big grants to write a book about sickle cell, and the royalties from that allow us to give away three copies for every ten we sell. The book is sold to bigger clinics, hospitals, and newborn screening programs. Global Genes was one of the grant providers. On top of that, we do fundraising locally. We are trying to pair with other diseases, like thalassemia. We’re also under an umbrella organization called the Sickle Cell Community Consortium, which is based out of Georgia. All of the small organizations come together to apply for bigger grants, so we can have more stuff on the ground than we’d ever be able to do by ourselves.

What’s changing at your organization in the next year: I just got back from a leadership conference in Atlanta organized by the Sickle Cell Community Consortium. One of the things they talked about is to think about what privileges you have that you were born with and how you use those to advocate. Typically, I am the only whiter person there, which I was. I thought, I wonder if that means how do I use my obvious racial privilege, which I don’t think about every day, to get sickle cell at the table. One of the things people don’t think about is that they racially profile an illness—I’m Italian and Greek, and my husband is Irish. He carries a thalassemia trait. People don’t realize that if the sickle cell trait matches up with any hemoglobinopathy, which is a hemoglobin disorder, they will have a type of sickle cell disease. There are about 150 types. All the people from Europe who are carrying the thalassemia gene, which is fairly common, have no idea they can possibly have a child with sickle cell.

Management Style
Management philosophy: I want people to bring to the table their strengths and then we can work around them. Especially in rare disease, we just want to get their voices out there. Where are your strengths? Are you good at photography? Are you good at talking to people? Are you interested in politics? That’s an avenue we’re going to try to unite with other groups on. Be honest about what your strengths are and what your heart desires, and we can find a place to utilize you.

Guiding principles for running an effective organization: Keep sickle cell at the forefront and remember why we are coming together. When you have a lot of advocates in one group, we are all so headstrong at times. We have to keep our eyes on the prize.

Best way to keep your organization relevant: To find partnerships when you can because that increases your voice. You are already a rare disease to begin with. And stay up to date within your area with the research. That’s a huge piece.

Why people like working for you: We think outside the box, like what I said about adult learning. We try to come at things from an unusual approach.

Mentor: A gal that is now at the National Institutes of Health. Andrea Matthews.  She’s the mom of a sickle cell patient as well. Her son is going to be 18. The way she took her son’s diagnosis, started an organization, and then built it up from the ground—Children’s Sickle Cell Foundation. She’s been the one who said, “Everyone in rare disease has something that they are really good at. You can make a difference in that field so take it and run with it and we’re all going to support each other.” I really appreciate that. How can we work together and take our talents to get people to hear more about our disease. I love her. I still talk to her. She’s great.

On the Job
What inspires you: My daughter, for sure. We don’t actually know anybody where we live who has sickle cell. There are some adults, but no one she’s friends with. She came with me to the leadership conference even though there was technically nothing there for a kid. She just wanted to sit in a room with people who shared your diagnosis. She said, “They are so strong mom. I want to be just like them.” She’s already a huge advocate. She’s 9.

What makes you hopeful: Pharmaceuticals taking an interest in maybe finding a cure. Ultimately, its my faith in God. He put us here for a reason. He gave us a task, and that’s what we’re going to do.

Best organization decision: Uniting our voice with other organizations with a bunch of small organizations so we have a bigger impact on the world outside of sickle cell.

Hardest lesson learned: Just because you tell somebody about your illness, doesn’t mean they want to have anything to do with it—even family and friends.

Toughest organization decision: To move from Colorado to North Carolina. We have a very good relationship with the clinics and the other community-based organizations in Colorado. There’s nothing in our part of North Carolina. We’re starting from the ground up to get buy-in and have a support group.

Biggest missed opportunity: Not writing books sooner—not using that platform. It took us about three years as an organization to say, “This is what we’re going to do. I don’t know how we’re going to fund it. I don’t know who’s going to publish it, but this is what we’re going to do.” We knew the gap was there since my daughter was born. When she was born, they gave us this crazy, 400-page book that has a lot of great resources in it. But when you child is five-weeks old, you don’t want to go from birth through death. They don’t do that with cancer. They don’t give you every possible, horrible thing that can happen, but that’s what we got. This book had every single complication. What to expect at end of life. I couldn’t read it. It was too much. It sat on the shelf for five years. I wish we had written our book sooner and gotten into politics sooner.

Like best about the job: Finally meeting other people with the diagnosis. And watching Sophia, and myself as well, explain to people what it is and demystify the illness.

Like least about the job: Getting people to donate money. It’s hard.

Pet peeve: When people discriminate against you in the hospital. I’ve had people kick us out of the ER because of her race. They see this pale girl in their hospital room and they think we’re seeking drugs from ourselves. There really isn’t a treatment when you have a blockage. They dope you up and you have to wait for your body to work it through.  I’ve had people think I have Munchausen’s, or think I’m going to steal her morphine.

First choice for a new career: Write curriculum forever. I really like that side of things.

Personal Taste
Most influential book: The Bible

Favorite movie: Bahkita, she’s a Catholic saint and was an African slave who became a nun.

Favorite music: Praise and worship

Favorite food: Ice cream

Guilty pleasure: Eating large quantities of ice cream. Eating the entire Ben and Jerry’s container.

Favorite way to spend free time: Hiking

April 12, 2018
Photo: Lisa Rose with daughter Sophia

 

 

 

Filed Under: People & Organizations, Rare Community

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