Kicking off the Season in Style!

By Mary Wheatley, IOM, CAE

Oh, what a week! The holiday season is officially underway, and our National Scleroderma Foundation community has kicked it off in signature style!

The last week has been such an example of our mission in action. It all started with the (dare I say world famous) Sunday Sit-down with Lucille Miller, who chairs our Ohio Chapter. Lucille invited me to join her for her monthly fireside chat to share some timely updates with the community, such as opportunities to give back via #GivingTuesdayAmazonSmile and recurring gifts. You can view a recording of our live event on Facebook.

Last Monday, I travelled to our headquarters in Danvers, Massachusetts to spend a week with some of our staff team. We kicked off the week with a half-day culture mapping workshop to continue our work to design our ideal organizational culture. Our team is incredibly thoughtful in their strategy and approach to identifying and modelling behaviors that will lead to our desired outcomes, and committed to the accountability required to move this work forward. Ashley Pruett, our Senior Director for Chapter Operations led this culture mapping work, while Jess Haas Greus, MBA, our Senior Director for Philanthropy and External Relations led the team in a session on #activelistening. We are fortunate to have wonderful staff leadership at the Foundation who are invested in continuous professional development of our team!

Tuesday, of course was #GivingTuesday where we set another organization record, thanks to your generosity. We raised more than $50,000 total, including more than $9,000 during our “power hour,” which allowed us to unlock a $5,000 match from Horizon. Other highlights include our Celebrity Ambassador Ashley Barron joining us on the day with a call to action, and live streams from the Danvers office on Instagram and Facebook to garner more support.

Wednesday evening, our Board Vice Chair, and Chair of our Research Committee, Carol Feghali-Bostwick led a virtual holiday happy hour with our Board of Directors where she highlighted several of our exciting research projects from our current portfolio. You can view a recording of this session on Youtube.

Thursday, we had our final chapter call of the year, led by our Tri-State Chapter Executive Director Julio Garcia where staff and leadership of our 16 chapters across the country came together to share updates and plans for the final days of 2022 and exciting plans for the new year.

On Friday, my husband Shannon flew up to meet me in Boston, and we drove to Rhode Island to spend the weekend with dear friends as they celebrated 10 years of marriage.

Saturday was our Ohio Chapter’s panel discussion on Riding the Emotional Rollercoaster. This session paired people living with scleroderma and their caregivers, to share their experiences, and then break out to discuss with members of the community.

Then, it was back to Boston on Sunday to meet our peer reviewers for dinner before they meet to review our research grant applications. Their scores and rankings will be vetted by our Research Committee and presented to our Board for funding approval next week. We are so grateful to these volunteers who give their time and expertise to help us meet this mission priority.

So there you have it, a week in the life of the Foundation – we are always at work to fulfill our mission to advance medical research, promote disease awareness, and provide support and education to people with scleroderma, their families and support network. If you’d like to get involved, or support our work, please visit to learn more! You may also reach out to and a member of our team will be happy to assist.

Wishing you and yours a happy and healthy holiday season.