National Scleroderma Foundation Introduces the Neerja Marwaha Bhagat Research Scholar Fellowship to Advance Scleroderma Research

DANVERS, MA. – The National Scleroderma Foundation is proud to announce the creation of the Neerja Marwaha Bhagat Research Scholar Fellowship. This prestigious fellowship aims to support scleroderma researchers dedicated to uncovering the origins and developing a cure for scleroderma.  

The fellowship is named in memory of Neerja Marwaha Bhagat, a revered leader of the National Scleroderma Foundation Mid-Atlantic Chapter, who passionately served as Chapter Chair for over a decade. Bhagat’s unwavering commitment to advancing scleroderma awareness and her significant contributions to the community are celebrated through this initiative. Her legacy continues through her family, friends, and the countless individuals she inspired. 

Bhagat’s efforts, particularly in organizing the chapter’s Stepping Out to Cure Scleroderma walks, played an important role in raising awareness and fostering a supportive community for those affected by scleroderma. Her enduring impact is remembered and cherished by her husband, Dr. Pradip Bhagat; her children, Deepak and Nishi; her brothers, Dr. Vijay Marwaha and Dr. Ajay Marwaha; and close family, including Drs. Subhash and Hedwig Marwaha, and Andrew and Raj.   

“By establishing this fellowship, our hope is that important research in scleroderma will be stimulated by bright new minds in the field,” shared Dr. Marwaha. “Our family is honored to partner with the National Scleroderma Foundation to support research scholars interested in pursuing novel ideas in scleroderma.”   

Annually, the fellowship will recognize one National Scleroderma Foundation fellow as the Neerja Marwaha Bhagat Research Scholar. This accolade highlights their dedication to making significant strides toward understanding the causes of scleroderma and finding a cure.  

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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Today, on Rare Disease Day, the National Scleroderma Foundation (Foundation) joins the global community in raising awareness and advocating for greater support for those affected by rare diseases, particularly scleroderma. Rare Disease Day serves as a poignant reminder of the challenges faced by individuals living with rare diseases and the urgent need for increased understanding, research, and support.  

Scleroderma affects more than 300,000 individuals across the U.S. and is widely unknown. For those living with scleroderma, Rare Disease Day is an opportunity to teach others about scleroderma and connect with those experiencing similar scleroderma journeys. 

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. 

“We stand in solidarity with the rare disease community on this important day,” said Mary Wheatley, CEO of the National Scleroderma Foundation. “Scleroderma presents unique obstacles to patients and their families, from challenging symptoms to a lack of effective treatments. By raising awareness and fostering collaboration, we can empower those living with scleroderma and drive progress towards improved outcomes.” 

To further raise awareness of Rare Disease Day, the National Organization for Rare Disorders (NORD) is taking its mission of creating a brighter future for people with rare diseases to NBC’s Today Show in New York City. Many individuals from the scleroderma community will join at Rockefeller Plaza to advocate for faster diagnoses, accelerated research, new treatments, and patient support to help the 1 in 10 Americans living with rare diseases. 

If you live with scleroderma, Rare Disease Day is an opportunity to get involved, find community, and raise awareness. Join a support group, learn how to advocate, or check out our library of educational resources at scleroderma.org.  

To learn more about the unique journeys of those living with scleroderma, visit scleroderma.org/rare-disease-day. 

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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DANVERS, MA., February 26, 2024 – On February 24, the 2024 Stepping Out to Cure Scleroderma walk season kicked off in Coconut Creek, Florida. This year, walks will be held across the country by our thirteen chapters throughout the year. These events help unite the scleroderma community, raise awareness for the rare disease, and provide essential funding for the National Scleroderma Foundation. Since 1997, members of the scleroderma community have joined together to increase awareness and funds through Stepping Out to Cure Scleroderma walks.

Currently, scleroderma affects more than 300,000 Americans and can be life-threatening. The disease can affect people of all ages, genders, and backgrounds. Whether you are affected by scleroderma or helping the community, Stepping Out to Cure Scleroderma Walks are a great way to get involved. 

Over the last five years, the Foundation has raised over $3.75 million through Stepping Out to Cure Scleroderma Walks. Each walk brings the community closer and builds relationships among those affected by scleroderma, especially those newly diagnosed and their loved ones.

If you or a loved one would like to join a Stepping Out to Scleroderma walk, visit scleroderma.org/steppingout.

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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Dr. Carol Feghali-Bostwick, a distinguished translational researcher and the SmartState and Kitty Trask Holt Endowed Chair for Scleroderma Research at MUSC, has been honored with the prestigious title of Fellow by the National Academy of Inventors (NAI). The announcement comes as Dr. Feghali-Bostwick joins a select group of 169 innovators acknowledged for their exceptional contributions to various disciplines. 

Election as an NAI Fellow is a testament to Dr. Feghali-Bostwick’s groundbreaking work in fibrosis and systemic sclerosis, marking her commitment to transforming cutting-edge research into tangible technologies that benefit society. Recognized as the highest professional distinction for academic inventors, this accolade is a celebration of her collaboration, dedication, and innovative spirit. 

Beyond her exemplary research, Dr. Feghali-Bostwick is deeply invested in cultivating the next generation of translational researchers, championing diversity in the field. As the director of the South Carolina Clinical & Translational Research Institute Translational Workforce Development program and SCTR’s TL1 program, she provides invaluable training to professionals and predoctoral students, fostering their passion for clinical and translational research. Dr. Feghali-Bostwick’s commitment extends to post-doctoral researchers focusing on lung-related studies. 

A luminary in her field, Dr. Feghali-Bostwick holds an impressive portfolio of 20 patents, with more pending. In addition to her groundbreaking research, she directs STEM-Coaching and Resources for Entrepreneurial Women (CREW), an initiative aimed at mentoring and coaching women, particularly underserved minority women, to become and remain engaged in entrepreneurial activities throughout their careers. 

The 2023 NAI Fellow class, representing 118 research universities and institutions worldwide, boasts an impressive lineup of 2 Nobel Laureates, 3 National Inventors Hall of Fame inductees, and 22 members of the National Academies of Sciences, Engineering, and Medicine. Collectively, this class holds over 4,600 issued U.S. patents. Since its inception in 2012, the NAI Fellows Program has contributed to over 63,000 issued U.S. patents and 13,000 licensed technologies, generating over $3 trillion in revenue and creating more than a million jobs. 

Carol Feghali-Bostwick, Ph.D., was recruited to the Medical University of South Carolina Division of Rheumatology and Immunology in 2013 as the SmartState and Kitty Trask Holt Endowed Chair and Professor of Medicine. Dr. Feghali-Bostwick earned her Ph.D. in Microbiology and Immunology at Tulane University in New Orleans, Louisiana. At MUSC, Dr. Feghali-Bostwick leads a team of clinical and basic scientists focusing on the pathogenic mechanisms underlying fibrosis whose goal is to identify novel targets for therapy and develop new anti-fibrotic strategies for scleroderma/systemic sclerosis, idiopathic pulmonary fibrosis, and other fibrosing conditions. Dr. Feghali-Bostwick also contributes to the mentoring of young physicians and academic scientists. She serves as Vice Chair of the Board of Directors for the National Scleroderma Foundation and is also Chair of the Research Committee and liaison to the Medical and Scientific Advisory Committee.  

To learn more about Dr. Feghali-Bostwick and this high honor, please visit the MUSC website.

ABOUT SCLERODERMA 

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.   

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. 

ORLANDO, Fla., January 29, 2024 (Newswire.com) – The Assistance Fund, an independent charitable patient assistance organization that helps patients and families facing high medical out-of-pocket costs, today announced the launch of a new financial assistance program for people living with systemic sclerosis. The program is designed to help eligible individuals pay for their out-of-pocket medical costs for treatment, such as copayments, health insurance premiums, and incidental medical expenses related to the condition.

Systemic sclerosis, sometimes called systemic scleroderma, is one of two major kinds of scleroderma—an inflammation of the skin and other body parts.[1] The condition is more prevalent in women and disproportionately impacts African Americans. People living with systemic sclerosis can experience blood vessel or organ damage that develops quickly.

“TAF’s Systemic Sclerosis Financial Assistance Program is a testament to our shared dedication to improving the lives of people living with systemic sclerosis,” said Mary Wheatley, Chief Executive Officer of the National Scleroderma Foundation. “Through the program, many families will receive not just financial assistance but peace of mind—and ultimately—hope.”

“Individuals confronting a diagnosis of systemic sclerosis should not have the added stress of determining how to cover the costs of essential treatment,” said Danielle Vizcaino, President and CEO of The Assistance Fund. “The generosity of our donors has made it possible for The Assistance Fund’s Systemic Sclerosis Financial Assistance Program to provide people grappling with the challenges of this debilitating condition with access to the treatment they need.”

To learn more or determine eligibility for financial support, visit tafcares.org or call (833) 609-7234 to speak with a Patient Advocate.

A list of all the disease programs available from The Assistance Fund can be found on the website tafcares.org.

About The Assistance Fund

The Assistance Fund (TAF) is an independent charitable patient assistance organization that helps patients and families facing high medical out-of-pocket costs by providing financial assistance for their copayments, coinsurance, deductibles, and other health-related expenses. The Assistance Fund currently manages more than 90 disease programs, each of which covers all the FDA-approved medications that treat a specific disease named in the disease program. Since its founding in 2009, TAF has helped more than 190,000 children and adults access the treatment they need to stay healthy or manage a life-threatening, chronic, or rare disease. To learn more about The Assistance Fund, or for information on how to donate, please visit tafcares.org.

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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Are you hoping to close this year with a charitable gift that supports the scleroderma community and reduces your taxes?  Consider these options:

MAKE AN IMMEDIATE IMPACT

Writing a check to the Foundation, donating online, or donating by phone can result in tax savings.  If you itemize deductions, you can write off the amount you donate, resulting in lower taxable income.  Giving by mail?  Make sure your envelope is postmarked on or before Dec. 31 to qualify for tax savings this year. Giving by phone? Call us at (800) 722-4673.

USE APPRECIATED SECURITIES

Making a gift via stock or other securities (such as bonds or mutual funds) that you’ve held for more than one year can offer immediate tax saving benefits and may eliminate any tax on appreciation.   Please complete the following form when you gift securities to the Foundation.

MAKE A GIFT FROM YOUR IRA

If you are 70½ or older, you can make direct tax-free transfers up to $100,000 from your IRA to the National Scleroderma Foundation.  These gift(s) will count toward all or part of your required minimum distribution.  Be sure the check has your name and address on it and that your IRA custodian transfers the funds by Dec. 31 so your donation can qualify for tax savings this year.

GIVE THROUGH YOUR DONOR ADVISED FUND (DAF)

The National Scleroderma Foundation is eligible to receive distributions from most Donor Advised Funds.  You can open a new DAF by a written agreement at a community foundation or sponsoring organization, add funds to an existing DAF, and/or recommending a grant (or recurring grants) to support the Foundation.  

HAVE QUESTIONS?

Our staff is happy to help you realize the greatest benefit for your generosity.  Please contact the Development office at (800) 722-4673 or by email at development@scleroderma.org.

Danvers, Mass. – The National Scleroderma Foundation, the leading nonprofit funder of peer-reviewed research to discover the cause, understand the mechanisms, and overcome scleroderma forever, is proud to announce that, thanks to generous donors, the 2023 GivingTuesday event brought in over $100,000 in donations to support the scleroderma community. 

GivingTuesday, a global generosity movement unleashing the power of people and organizations to transform their communities and their world kicked off the generosity season this year by inspiring people to give back on Nov. 28, 2023, and throughout the year. 

“The National Scleroderma Foundation is incredibly moved by the showing of support we witnessed this GivingTuesday,” said Mary Wheatley, CEO of the National Scleroderma Foundation. “We are also so grateful to our partner Amgen for matching individual donations up to $25,000, significantly increasing the strength of these crucial funds, which will support our efforts to find a cure for this disease. ” 

“Each person who donated and shared our call to action can count themselves a true hero who helped us make Foundation history this GivingTuesday,” said Lauren Galvan, National Scleroderma Foundation Senior Manager of Development. “It takes a village to fund our mission, so it was incredibly inspiring to see everyone unite and demonstrate such remarkable support for the scleroderma community.”

About Scleroderma

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.  

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.

About GivingTuesday 

GivingTuesday is a global generosity movement unleashing the power of people and organizations to transform their communities and the world. GivingTuesday was created in 2012 as a simple idea: a day that encourages people to do good. Over the past ten years, it has grown into a global movement that inspires hundreds of millions of people to give, collaborate, and celebrate generosity. 

Whether it’s making someone smile, helping a neighbor or stranger out, showing up for an issue or people we care about, or giving some of what we have to those who need our help, every act of generosity counts, and everyone has something to give. GivingTuesday strives to build a world in which the catalytic power of generosity is at the heart of the society we build together, unlocking dignity, opportunity, and equity around the globe.
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Chicago, Illinois – The National Scleroderma Foundation, the leading nonprofit funder of peer-reviewed research to discover the cause, understand the mechanisms, and overcome scleroderma forever, spent Thanksgiving Day participating in the 27th Anniversary Edison Park Turkey Trot in Chicago. The event, attended by 6,000 people, provided an opportunity for the Foundation to raise awareness for scleroderma as well as funds to continue researching the cure for the disease. 

“On the very holiday dedicated to giving thanks for our blessings, we had over 6,000 blessings right there in front of us,” said Lauren Galvan, Senior Manager of Development. “Each and every person who was there walked, ran, strolled, rode, and participated in a race not only to have fun or to celebrate Thanksgiving, but to also win the prize of a cure for everyone living with scleroderma. To have that many people in one place at one time join our fight for a cure was an incredibly moving experience that nearly brought us to tears.” 

Lauren was joined by local volunteers to help with race-day activities, including an opportunity to speak to attendees on behalf of the Foundation. “To be able to spread the word about a disease that so few know about to so many people at one time was an amazing opportunity,” said Michelle Peters. “I felt privileged to be a part of an event that was so generous.”

About Scleroderma

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.  

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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Danvers, Mass. – The National Scleroderma Foundation, the leading nonprofit funder of peer-reviewed research to discover the cause, understand the mechanisms, and overcome scleroderma forever, is proud to announce that Amgen, formerly Horizon Therapeutics, in honor of the Foundation’s 25th anniversary, has generously committed to match up to $25,000 in donations for the 2023 GivingTuesday event.

Launched in 2012 as a simple idea to create a day that encourages people to do good, GivingTuesday is now a global generosity movement, unleashing the power of people and organizations to transform their communities and their world. GivingTuesday will kick off the generosity season this year by inspiring people to give back on November 28, 2023, and throughout the year.

“GivingTuesday inspires people all around the world to embrace their power to drive progress around the causes they care about, not just on one day but throughout the year,” said Asha Curran, GivingTuesday’s CEO, and co-founder.

“The National Scleroderma Foundation is proud to partner with Amgen in supporting the amazing scleroderma community we serve this GivingTuesday,” said Mary Wheatley, CEO of the National Scleroderma Foundation. “By matching individual donations, Amgen is really boosting the power of these essential funds that will help us in our work toward a cure for this disease. On the 25th anniversary of the Foundation, this is a wonderful partnership to celebrate!”

“We’re honored to have a meaningful relationship with the National Scleroderma Foundation and come together on GivingTuesday to amplify the voices of the scleroderma community and raise awareness about the unmet treatment challenges for this disease,” said Matt Flesch, vice president, Product Communications and Patient Advocacy, Rare Disease at Amgen.

Those who are interested in joining the National Scleroderma’s GivingTuesday initiative can visit scleroderma.org/givingtuesday. 

About Scleroderma

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.  

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.

About GivingTuesday

GivingTuesday is a global generosity movement unleashing the power of people and organizations to transform their communities and the world. GivingTuesday was created in 2012 as a simple idea: a day that encourages people to do good. Over the past ten years, it has grown into a global movement that inspires hundreds of millions of people to give, collaborate, and celebrate generosity.

Whether it’s making someone smile, helping a neighbor or stranger out, showing up for an issue or people we care about, or giving some of what we have to those who need our help, every act of generosity counts, and everyone has something to give. GivingTuesday strives to build a world in which the catalytic power of generosity is at the heart of the society we build together, unlocking dignity, opportunity, and equity around the globe.

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