National Scleroderma Foundation Recognizes Community Leaders for Contributions to Mission Work

The National Scleroderma Foundation has conferred 14 awards at the Volunteer Awards Recognition luncheon hosted by Desiree James, Chair of the Florida & Puerto Rico Chapter

ORLANDO, JULY 15, 2023 — The National Scleroderma Foundation hosted their 2023 Volunteer Awards Recognition luncheon at the National Scleroderma Conference in Orlando, Florida. Each year the Foundation recognizes volunteers for their outstanding work in support of its mission to advance medical research, promote disease awareness, and provide support and education to people with scleroderma. This year, the Foundation conferred 14 awards. The Volunteer Awards Recognition luncheon was hosted by Desiree James, Chair of the Florida & Puerto Rico Chapter “I am thrilled the National Conference is being held in the state of Florida this year. I am also excited to be involved in recognizing this group of outstanding volunteers and the positive impact they have had on the scleroderma community,” shared Desiree James.

The 2023 awards and recipients include:

The Individual Fundraiser of the Year is awarded to an individual who has made an outstanding contribution to fundraising in their chapter and shows consistent excellence through their actions and leadership. This year, Maria Bartoszewicki of the New England Chapter was awarded for her long-time work on the Deer Island Stroll in honor of her father, Don Legere. 

The Chapter Support Group Volunteer of the Year is awarded to a support group leader who leads by example and encourages others to engage in their community. This year, Meryl Parr of the Florida & Puerto Rico Chapter was awarded for her long-time role as a support group leader in her chapter. After her husband’s passing, Meryl decided to become active in the chapter and get involved with the support groups, which she has led for many years in the Southeast Florida community.

The Outstanding Patient Support Award is awarded to an individual who has continuously supported, educated, and uplifted their community. This was awarded to Michael Bessert for his long-time work with patient support, including starting the 20% Men’s Support. Michael makes himself available to anyone that has a question or needs a listening ear. 

The Outstanding Chapter Awareness Award is awarded to a Chapter that consistently keeps awareness and advocacy integral to chapter operations. This was awarded to the Tri-State Chapter. The Tri-State Chapter provides programming to Connecticut, New York, and Northern New Jersey.

The Advocate of the Year is awarded to an individual who personifies what it means to “speak up for scleroderma” and is active in awareness and advocacy to better the scleroderma community on a national level. This was awarded to Lucille Miller. From Lucille’s Sunday Sitdown on Facebook gaining national attention to her 2022 leadership in the Ohio Chapter contacting every senator and representative, Lucille’s advocacy efforts have been commendable.

The Outstanding Educational Program is awarded to an individual, group, or chapter that has maximized available resources within the community to provide patients with an excellent educational experience. This year, the award went to the South Carolina Chapter and chairs Karen Kemper and Susan Melvin for the 13th Amy K. Parrish Scleroderma Education Conference. 

The Chapter Volunteer of the Year is awarded to an individual who leads by example and encourages others to engage in their local and regional community. This year, Rhonda Costa, of the Missouri Chapter, was awarded for her long-time dedication to the Foundation, and most recently, running the Missouri Chapter as Chair for the last several years. 

The Philanthropist of the Year is awarded to an individual who has made an outstanding contribution to fundraising and shows consistent excellence through their actions and leadership. This year, David Rosenberg & Bruce Gordon were awarded for their work as co-founders and co-chairs of the New England Chapter’s premiere fundraising event, the Annual Golf Classic held at the Salem Country Club, a USGA championship course. 

The National Volunteer of the Year award is awarded to an individual who leads by example and encourages others to engage in their community. This was awarded to Evamarie Cole, who supports the mission of the Foundation in all aspects. She has supported the Tri-State Chapter as a support group leader to Metro 5, Chapter Advisory Committee lead for Tri-State Advocacy and Awareness, Co-Chair of the National Patient Advisory Board, facilitator for the BIPOC support group, and advocate for patient stories for the DoD funding bill.  

The Chapter of the Year is awarded for overall excellence in advancing the mission of the Foundation in the areas of support, education, and research by a chapter. This year, the Ohio Chapter was awarded for excelling in many areas that provided patient care, education, and funds for scleroderma. 

The Jacob Davila Memorial Leadership Award was established to honor the recognition of Jacob Davila from Humble, Texas. Jacob was a long-time volunteer and advocate for Scleroderma and the National Scleroderma Foundation. The volunteer awardee will be selected based on the following criteria: 1) prepared for service and understands that true wisdom is gained in community and that serving others is a privilege and an honor, 2) Serves as a community builder who believes in enriching and ennobling the lives of others within the scleroderma community, and 3) Demonstrates characteristics consistent with servant leadership. The inaugural awardee for the Jacob Davila Memorial Leadership Awards was Evamarie Cole from the Tri-State Chapter. 

The Messenger of Hope Award is awarded to an individual whose words and/or actions offer continued hope and inspiration to our community. This year, Beth Auman was awarded for her long-time work in our scleroderma community as a voice of patients. Beth has had scleroderma for many years and is a wealth of knowledge willing to share physician information, latest research data, and all aspects of daily life with scleroderma with anyone in the scleroderma community. 

The Doctor of the Year is awarded to the physician whose dedication has improved the lives of thousands of people living with scleroderma and who demonstrates exceptional skills in clinical practice and patient education while maintaining the mission, vision, and values of the Foundation. This year, Dr. Janet Poole was awarded Doctor of the Year. Thanks to her efforts, we recognize that the sooner a person with systemic sclerosis focuses on hand exercise, the less likely they are to develop contractures and hand disability, as well as decreased arthritis symptoms and improved circulation in the hands. 

The Lifetime Achievement Award is the Foundation’s highest honor and is awarded to individuals who have given extraordinary service to the organization. This year, Marilyn Sibley was awarded the Lifetime Achievement Award for more than 15 years of going above and beyond to help patients, caregivers, and friends.  Since losing her sister Rosa to the disease, Marilyn has continued supporting the scleroderma community by leading support groups, walks, and awareness campaigns, as well as creating the BIPOC support group, giving special emphasis to the people of color community, which covers the highest percentage of disparities and lack of sources and education. 

“Each of this year’s award recipients is making a direct impact in their community, and nationally, to raise awareness and support for scleroderma support, education and research. Thanks to their tireless efforts, we are closer than ever to realizing our vision of finding a cure,” shared CEO Mary J. Wheatley. 


Scleroderma is a rare rheumatic disease that affects connective tissue and the vascular system causing an overproduction of collagen (fibrosis) in the skin (localized scleroderma), and the internal organs (systemic sclerosis), which can be life-threatening. Anyone can have scleroderma. The cause is not yet known, and there is no cure.  


A relentless force in finding a cure and improving the lives of people affected by scleroderma, the National Scleroderma Foundation advances medical research, promotes disease awareness, and provides support and education to people with scleroderma, their families and support networks. Supported by a network of thousands of individuals across the United States, the Foundation is the leading nonprofit funder of peer-reviewed research to discover the cause, understand the mechanisms, and overcome scleroderma forever.