About Us
The National Scleroderma Foundation’s mission is to advance medical research, promote disease awareness, and provide support and education to people with scleroderma, their families and support networks.
Our vision is to be a relentless force in finding a cure and improving the lives of people affected by scleroderma.
Strategic Framework
As the leading patient advocacy organization serving people living with scleroderma in the United States, the National Scleroderma Foundation is positioned to play an important role in addressing the challenges of the future. To that end, the Board of Directors has approved a strategic framework that enables us to focus the Foundation’s efforts toward maximizing the impact we can have on complex issues facing those living with scleroderma, their families and support networks as well as the medical and scientific communities.
This framework is meant to serve our organization in an ever-changing world and provide flexibility in scope and scale, while providing a clear vision of where we want to go, and where we need to be, in order to best serve the scleroderma community in the U.S.
>> Review the Strategic Framework for 2024 and Beyond.
Stakeholder Updates
Attend quarterly stakeholder updates presented by CEO Mary J. Wheatley, IOM, CAE. Learn about progress in our exciting work to strengthen our organization and to build capacity for growth in support of individuals affected by scleroderma, to expand our education programs, and to build greater resources for research funding. Recordings of past updates are listed below and are saved to the Foundation’s YouTube channel. To receive notifications of future stakeholder updates, subscribe to the Foundation’s weekly eLetter, Scleroderma Connections. You can also check our Calendar to register.
Recordings of Quarterly Updates:
Culture
The Foundation wouldn’t be here without the extraordinarily talented staff and volunteer team, and a dedicated scleroderma community. Much of our success to date can be attributed to the special connections members of our community have forged with one another over the years, including those diagnosed with scleroderma, and those who diagnose and treat the disease. We stand on the shoulders of giants who have made it their life’s work to find a cure, and we are proud to carry on that legacy.
To help us think about how to honor this legacy, how we can do our best work together, as well as who will work best with us, we had to think about the values that have served us well so far – and those we aspire to – and write them down.
At the Foundation, we are a relentless force in finding a cure and helping those with scleroderma live better, and it shows in everything we do.
We invite members of our community, leadership, and team into our culture in an intentional way. We are accountable to one another for keeping in alignment with our culture, and for measuring our alignment with these agreed-upon values. As we grow, we will continue to revisit and make sure these still hold true. As we encounter challenges along the way, we will evaluate whether we’re living inside the culture we designed for ourselves or if we need to adjust to incorporate new values that reflect higher standards.
Our Culture
We share a commitment to our mission, which inspires us to always do our best.
We take care as a team to build connection and foster trust with each other.
We lead with integrity.
We steward a community in which everyone can share openly and engage authentically.
Our values
- We CARE for our community, and for one another
We are interested in and concerned for the health and wellness of those impacted by scleroderma, and we work toward a shared mission every day to advance medical research, promote disease awareness, and provide support and education to people with scleroderma, their families and support network.
- CONNECTION is our superpower
We build connections within our team, and within our community to strengthen our collective impact. We connect people with the part of our mission that matters most to them and help them find the resources to find their best path.
- We believe there is power in DIVERSITY
We know that our greatest strength comes from our people – our staff team, our leadership, donors, and those who make up our scleroderma community. We embrace the unique ideas and perspectives each member of our community brings to the Foundation with the confidence that it makes us better.
- INTEGRITY is non-negotiable
We stand on a foundation of integrity, which is the essential ingredient in everything we do. We are honest and straightforward. We communicate with transparency. We do the right thing, even when no one is watching.
- MEANINGFUL WORK drives us
We believe in the mission and vision of the organization, and it drives us to do our best every day, in service of those impacted by scleroderma. We can recruit the best and brightest because of our culture, and our devotion to servant leadership.
- TRUST is imperative
We know we can count on one another to deliver what we say we will, and we know we can hold one another accountable, even in difficult seasons.
We embrace BRAVING1 as a roadmap for fostering trust.
- Boundaries – Clear about what is okay/what is not okay & why
- Reliability – Do what you say you are going to do … over & over again
- Accountability – Own your mistakes. Apologize. Make amends
- Vault – Acknowledge & hold confidences
- Integrity – Choose courage over comfort; choose right over what’s fun, fast or easy; practice your values (don’t just profess them)
- Non-Judgement – Allow people to be in struggle & ask for help without judgement
- Generosity – Assume the most generous things about other’s words, intentions & behaviors
1 Brown, B. (2018). Dare to lead. Vermilion.