To kick off National Volunteer Month, we are honoring our very own Desiree James of the National Scleroderma Foundation Florida-Puerto Rico Chapter! Desi has been volunteering for 7 years and is currently the Chair of our Chapter. Her #1 favorite aspect of being a volunteer is meeting, getting to know, and learning from other patients; and, in turn, being a resource for them. Thank you for your service, Desi!
Desiree James Highlighted During National Volunteer Month
Please join us in welcoming Brian Perkins as the Director of Communications. In this role, he will oversee all communications efforts for the National Scleroderma Foundation and its 13 chapters.
Brian comes to us from St. Louis Community College and has been working in communications for more than 15 years. He is based in the St. Louis area and will work remotely.
“It is an incredible privilege to join the Foundation’s passionate team. I am excited to support the leaders, the chapters, and the incredible community of volunteers that work relentlessly to improve the lives of people affected by scleroderma,” says Brian of his new role.
Please welcome Jean Martinho to the Foundation as our Senior Director, Philanthropy! In this role, she will lead the Foundation’s comprehensive philanthropy program, with an emphasis on building pipelines and relationships with major donors.
Jean comes to us with more than 20 years of experience in philanthropy, spanning from events to planned giving to major gifts and corporate initiatives. She has served in leadership roles with the American Cancer Society, Suffolk University and North Shore Community College. Jean is based in Lynnfield, Massachusetts.
“I am looking forward to joining the team at the National Scleroderma Foundation because of the amazing work they do. I feel incredibly fortunate to have such wonderful colleagues who are dedicated to helping those whose lives have been impacted by scleroderma,” says Jean of her new role.
Please join us in welcoming Kryston Skinner as the Executive Director of the Pacific Northwest Chapter. Kryston joins the team on Tuesday, March 26. In this role, she will oversee the Pacific Northwest Chapter, and lead them in their programs, services, and fundraising efforts.
Kryston comes to us from iVet360 where she was responsible for the project management, consulting and marketing strategy for more than 30 veterinary hospitals. She is based in Portland, Oregon and will work remotely.
“Raised by a mother whose invisible illness remained undiagnosed for years, I’m deeply grateful to stand with an organization that makes a tangible difference through outreach and advocacy. Advocacy, to me, isn’t just a concept; it’s a beacon of hope and liberation, offering solace and strength to individuals facing similar battles such as scleroderma.”
Please join us in welcoming Lorraine Biaggi as the Executive Director of the Florida & Puerto Rico Chapter. Lorraine joins the team on Monday, March 25. In this role, she will oversee the Florida & Puerto Rico Chapter, and lead them in their programs, services, and fundraising efforts.
Lorraine comes to us from the Museum of Contemporary Art in North Miami. She is based out of the Miami area, and will work remotely.
“I am excited to join the Foundation and team as Executive Director for the Florida & Puerto Rico Chapter. Together, we will deepen our commitment to providing vital support and resources to those impacted by scleroderma, creating a meaningful difference in our community.”
Please join us in welcoming Mirian Moultrie as the Executive Director of the New England Chapter. Mirian joined the team on Monday, March 18. In this role, she will oversee the New England Chapter, and lead them in their programs, services, and fundraising efforts.
Mirian comes to us from Big Brothers Big Sisters of Eastern Massachusetts, where she was the Regional Director of the South Coast. She is based in New Bedford, MA, and will work remotely.
“It’s my honor to be joining the team at the National Scleroderma Foundation as the Executive Director for the New England Chapter. I look forward to continuing the work of raising awareness and building strong relationships within the region. I am eager to learn from my team and bring my experiences and new perspective to the mission.”
National Scleroderma Foundation today announced a partnership with Komodo Health, a leading healthcare technology company. Through the new collaboration, the National Scleroderma Foundation will apply Komodo’s technology and patient-level insights to address some of the biggest challenges Scleroderma patients face as they navigate their healthcare journeys.
“This partnership, paired with insights from our patient champions, will enable the Foundation to generate accurate insights and deepen our understanding of the patient experience in scleroderma,” said Mary J. Wheatley, Chief Executive Officer of the National Scleroderma Foundation.
The National Scleroderma Foundation will leverage insights drawn from Komodo’s Prism application to better understand how to identify patients earlier, help patients find providers, and improve clinical trial recruitment. All of Komodo’s platform offerings, workflow applications, and technology services are built on its proprietary Healthcare Map, which includes more than 330 million de-identified patient journeys — from genomics and electronic healthcare records to insurance coverage and claims, race and ethnicity, and more.
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. It is a condition that can affect anyone, with no known cause or cure.
“We are thrilled to collaborate with the National Scleroderma Foundation, applying Komodo’s technology to support and empower those affected by scleroderma,” said Web Sun, President and Co-Founder of Komodo Health. “Through this work, we hope to make significant strides in reducing the impact of this challenging disease and ultimately transforming outcomes for those affected.”
ABOUT NATIONAL SCLERODERMA FOUNDATION
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. Learn more at scleroderma.org.
Media Contacts:
Communications@scleroderma.org
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DANVERS, MA – The National Scleroderma Foundation (Foundation) is proud to announce the 2024 grant recipients, awarding seven prestigious grants to a mix of new and established investigators. This year’s awards, totaling $1.4 million, underscore our ongoing commitment to propelling research forward, edging closer to a cure.
The Foundation’s rigorous, peer-reviewed research grants program, helmed by the Foundation’s Research Committee, prioritizes scientific merit and provides funding for both early career and established investigators working to unravel the complexities of scleroderma. Through our dedication to funding impactful projects, the Foundation has proudly committed more than $33 million to advance medical research in scleroderma since 1998.
Continued research is critical to accelerating scientific discovery, developing new treatments, providing hope to individuals living with the disease, and ultimately finding a cure for scleroderma.
The selection process for this year’s grants adhered to the National Institutes of Health’s guidelines and ranking system. This ensures that only proposals of the highest scientific and technical merit are recommended for funding. Our review panel, comprising renowned scientific experts, plays a pivotal role in maintaining these high standards.
This new research portfolio includes three New Investigator Awards and four Established Investigator Awards with a blend of basic and translational-focused science, including research focused on the pediatric population.
We are proud to introduce the 2024 Class of Investigators:
Ramadan Ali, PhD, University of Michigan | Mark Flapan New Investigator Award: exploring mechanistic connections between NETs and scleroderma vasculopathy
Brendon Baker, PhD, University of Michigan | Debra Lurvey Memorial Research Grant; Established Investigator Award: studying metabolic and epigenetic targeting of stromal cell-matrix crosstalk for reversing fibrosis in scleroderma
Laura Polivka, MD, PhD, Cedars-Sinai Medical Center (Los Angeles) | New Investigator Award (supported in part by the Marta Marx Fund for the Eradication of Scleroderma): exploring the pathogenesis of severe juvenile systemic sclerosis
Maria Teves, PhD, Virginia Commonwealth University | Walter & Marie Coyle Research Grant; Established Investigator Award: studying advancing scleroderma treatment with a study using primary cilia as a therapeutic target
Mohammed Osman, MD, PhD, University of Alberta | Established Investigator Award: evaluating a role for polysialic acid as a diagnostic, prognostic, and therapeutic target in systemic sclerosis
Reshmi Parameswaran, MS, PhD, Case Western Reserve University | Established Investigator Award: BAFF CAR-T treatment for systemic sclerosis
ABOUT NATIONAL SCLERODERMA FOUNDATION
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.
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Saturday, April 13, 9am – 3pm EDT