“You could be the person who finds the cure!” —
Debra Lurvey did not let her diagnosis of systemic scleroderma change her life’s purpose—living for her family. As a loving mother, grandmother, devoted wife, and an entrepreneur in her family business, Debra was determined to raise fighters like her. From her very core, she believed that life was worth fighting for no matter what it handed her or how hard it got, and she worked to instill this belief in her children and grandchildren by her own example.
For more than five years prior to receiving the correct diagnosis of systemic sclerosis, Debra was misdiagnosed with several other diseases. Her battle with scleroderma was long, painful, complex, and required Bosentan for 10 years. But Debra outlived scleroderma much longer than her doctors expected. Her husband, Greg, attributes this to the love, support, and care that she received from her family.
Debra was an avid reader of the Scleroderma Voice magazine and an attendee of many national conferences. Throughout her journey, she believed that a cure for scleroderma could be found if enough people knew about the disease. When speaking with physicians, nurses, residents, and medical students, Debra would always say:
“You could be the person who finds the cure!” She took every chance she had to raise awareness about scleroderma.
After Debra’s passing, Greg contacted the Foundation about his desire to establish an endowed memorial research grant in her honor. Greg relayed his gratitude that the National Scleroderma Foundation provided his family with great support throughout Debra’s journey as a patient, but he also made sure to emphasize just how grateful he was, and still is, that the Foundation supported research that directly contributed to a working body of knowledge used to treat Debra and others like her.
Thanks to the Lurvey family’s generosity, the Foundation is proud to share the establishment of the Debra Lurvey Memorial Research Grant. This grant awards an established investigator focused on lung-related research with a total of $200,000, $100,000 per year for two years. The funding for this award consists in part of a legacy gift endowing the grant in perpetuity. The first of many Debra Lurvey Memorial Research Grants will be awarded in January 2022.
“There are many ways to help and places to donate,” Greg said, “but the National Scleroderma Foundation has the longest reach to this specialized research community. By donating a large amount of money, we hope others connected to the Foundation will also feel moved to donate–whether it is to this grant, a new endowment, or to the Foundation in general. Hopefully, by bringing attention to the level of funds available to the medical community, we can generate interest in scleroderma and get more researchers involved at the early stages of development.”
This transformational gift to the Foundation is a multi-generational commitment for the Lurvey family, the family of fighters. Greg, his and Debra’s daughter, Rachelle, and Rachelle’s three
children—Jacob, Michael, and Isabella—are all part of establishing this award. Greg believes that creating an award with family involvement honors Debra’s love for her own family and shares her with other families. Greg hopes that the research funded by the Debra Lurvey Memorial Research Grant will allow others fighting scleroderma the ability to have quality lives with their loved ones.
The Scleroderma Foundation is humbled and honored that Greg chose to establish and endow the Debra Lurvey Memorial Research Grant, and we are also honored to welcome the Lurvey family as founding members of the Scleroderma Hope Society.
Through the Debra Lurvey Memorial Research Grant, Debra’s life’s purpose of living for family lives on forevermore—only now, Debra’s family is not just her own but includes everyone impacted by scleroderma and all of their loved ones, too.
If you are interested in learning more about the Scleroderma Hope Society or about how your legacy or the legacy of a loved one can make a difference in the lives of people with scleroderma, please send an email to firstname.lastname@example.org, or call (978) 463-5843.
Scleroderma is a rare autoimmune disease that affects connective tissue and the vascular system producing excessive collagen that causes fibrosis in the skin (localized) or in internal organs (systemic sclerosis). More than 300,000 Americans live with some type of scleroderma. Today, the face of scleroderma includes people of all ages, genders, and backgrounds. Scleroderma can affect young parents, children, grandparents, and teenagers, causing pain, disability, and death. Thanks to the passion and dedication of volunteer leaders, scientists and supporters, great strides have been made. Yet despite these advancements, the challenges in scleroderma today are greater than ever, requiring committed resources to achieve ambitious goals and outcomes.
ABOUT THE NATIONAL SCLERODERMA FOUNDATION
The National Scleroderma Foundation is a 501(c)(3) charitable organization founded in 1998 to advance medical research, promote disease awareness, and provide support and education to people with scleroderma. Supported by a network of thousands of individuals across the United States, the Foundation aims to help people living with scleroderma find their best path.
Original Release: October 15, 2021
Director of Communications