Mary Wheatley, IOM, CAE: The National Scleroderma Foundation

Rheumatology Network interviewed Mary Wheatley, IOM, CAE, to discuss the National Scleroderma Foundation, its recent name change, and the importance of raising awareness of this rare rheumatic condition.

Rheumatology Network: What prompted the change of name from the Scleroderma Foundation to the National Scleroderma Foundation?

Mary Wheatley, IOM, CAE: As we were considering everything that we do, the breadth and the scope of all of our programming across the country, we felt that adding the word “national” really helped define who we are a bit more. We're not just one place or one thing we truly are national in the scope of what we're doing. We have 19 chapters across the country and 160 support groups, so truly national in every sense of the word. Coast to coast, no matter where you are or what path you're on, we want to help connect people with the resources they need. And so, we thought that that was certainly fitting with making us more approachable and capturing the essence of who we are.

RN: Can you give me a bit more information about scleroderma as a rheumatic disease?

MW: Scleroderma is a rare rheumatic disease. that affects about 300,000 people in the United States. It affects the connective tissue, but also the vascular system, and it stems out of the production of excessive collagen. That can cause fibrosis in the skin, which is considered localized scleroderma, or in the internal organs [including] the heart, the lungs, kidneys, and liver. The result can be devastating to people who are affected by this disease, ranging from disfigurement to disability. And for some, it's really life threatening. We have many people in our community who have to have lung transplants. You can imagine when you think about the thickening of tissue, certainly that can affect your skin on the outside, but when it starts to affect your internal organs, like your heart and your lung, it really can start to be life threatening. And so that's why it's so important to fund research that we hope will lead to a cure.

RN: Why is it important to shine a light on this condition?

MW: It's relatively unknown. We kind of tease that it's hard to pronounce and even harder to understand. And it is a very complex disease because it affects the entire body. By shining a light and hopefully, by broadening the scope of what we do, and reaching out to more people and connecting them with resources, we can help educate the public about what the disease is. One of the reasons that's important is it can lead to earlier diagnosis. So, if you've heard of something and you start to become kind of familiar with what some of the symptoms are, you may ask the right questions in your doctor's office in your nurse's office that may lead to a diagnosis more quickly. That will improve your outcomes rather than having irreversible damage that can happen without diagnosis and treatment.

RN: Can you tell me a little bit more about the background and the history of this organization? MW: Sure. So it will turn 25 years old next year. We actually grew out of a merger of 2 organizations: an organization on the East coast that was really active and an organization on the West coast in California, the United Scleroderma Foundation, that was really active primarily on the west side of the country. And the 2 organizations came together in the late 90s and joined forces. Exactly true to the name of National Scleroderma Foundation, we really have more of a national impact and make sure that we're serving everyone affected by this disease. The leadership came together in a relatively short amount of time, about 18 months, and then launched the new organization in 1998. We'll be delighted to be celebrating our 25-year anniversary next year.

RN: What are the plans for the future of the National Scleroderma Foundation?

MW: In 2020, the Board of Directors approved a strategic plan that really focuses on building capacity and building infrastructure to serve people with scleroderma more effectively. So, we're looking at broadening our programs, not just geographically, because right now a lot of what we're doing is virtual because of the pandemic. And that's true for a lot of organizations. But we also want to be thoughtful about where people are not just geographically but where they are in their journey with scleroderma. And making sure that we have the right resources for them. We're looking at expansion as the next step. We've done a lot of work to build capacity in the organization to make sure we can deliver on these promises. And so the next part is really growing and expanding everything we're doing for people affected by scleroderma.

RN: Is there anything else that you would like our audience to know?

MW: [It’s imperative to be] having conversations, spreading awareness, and helping people understand why it’s important to be aware of rare diseases like scleroderma. Whether you're someone who is a family member, a friend, a caregiver of someone with a disease like scleroderma, or a health care provider, it's equally important because you're going to help us on that pathway to a cure.