National Scleroderma Foundation receives record-breaking donations on GivingTuesday

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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In partnership with the award-winning restaurant Uncork Charleston, the National Scleroderma Foundation Southeast Chapter invites you to Scleroderma Night on Thursday, November 2 between 4 pm and 12 am.

That night, 10% of all sales including dine in, takeout, gift cards, and wine sales will be donated to the Southeast Chapter to raise critical funds for the scleroderma community.

We hope you can join us! Bring friends and family along, too – the more, the merrier!

Scleroderma Night at Uncork Charleston
Thursday, November 2
4 pm to 12 am
Address: Uncork Charleston, 476 King St, Charleston, SC 29403

Learn more at https://www.facebook.com/events/24131972083083679/

ZOOM –
When: Sep 27, 2023 07:00 p.m. Eastern


After Raynaud Phenomenon and skin thickening involvement, the gastrointestinal system is the most common feature of scleroderma. The approach to diagnosis and management, and the ongoing research studies webinar will be led by Dr. Zsuzsanna McMahan, Associate Professor of Medicine at Houston and co-director of The UTHealth Houston Scleroderma Center. Dr. McMahan’s clinical and research expertise focuses on scleroderma (systemic sclerosis), particularly in the gastrointestinal complications of the disease. Join us on Wednesday, September 27, 2023, from 6:00 to 7:30 p.m. CT. This will be a Zoom event open to everyone.

Sign Up

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, announces they have received a Four-Star Rating from Charity Navigator for the seventh consecutive year. 

This rating designates the National Scleroderma Foundation as an official “Give with Confidence” charity, indicating that the organization is using its donations effectively based on Charity Navigator’s criteria. 

“Our Four-Star Charity Navigator Rating is further validation of our commitment to good governance and financial health,” said Mary Wheatley, CEO of the National Scleroderma Foundation. “Our supporters can trust that we are thoughtful stewards of their investment with us, and we hope that it will introduce our work to new supporters who can help us continue our work to find a cure.”

Charity Navigator is America’s largest and most-utilized independent charity evaluator. Since 2001, the organization has been an unbiased and trusted source of information for more than 11 million donors annually.

Charity Navigator analyzes nonprofit performance based on four key indicators, referred to as beacons. Currently, nonprofits can earn scores for the Impact & Results, Accountability & Finance, Culture & Community, and Leadership & Adaptability beacons.

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.

ABOUT CHARITY NAVIGATOR

Founded in 2002, Charity Navigator is a 501(c)(3) organization that guides intelligent giving with the nation’s largest, most comprehensive charity evaluation tool. The organization helps donors easily identify U.S.-registered charities making a difference on the issues they care about most while helping charities better understand their donors, deliver on impact, and increase awareness and funding. Learn more at charitynavigator.org.

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Creve Coeur Park Tremayne Pavilion, 13725 Marine, Creve Coeur, MO
When: October 7, 2023
Where: Creve Coeur Park Tremayne Pavilion, 13725 Marine, Creve Coeur, MO
Registration Time: 9:00 a.m.
Walk Time: 11:00 a.m.

Sign Up

Danvers, Massachusetts – The National Scleroderma Foundation, the leading nonprofit organization providing support and education to people with scleroderma, their families and support networks, recently announced the promotion of Ashley Pruett, M.Ed., to Vice President of Community Engagement.

“I am delighted to see Ashley take on this new role, which is critical to the Foundation’s success going forward,” shared Mary Wheatley, CEO of the National Scleroderma Foundation. “By building a robust leadership pipeline from the grassroots level to our national committees and board, we can ensure the future for people living with scleroderma will be bright. Ashley’s dedication to our community and to ensuring every voice is heard will serve us well as we build a Foundation for the future.” 

In her new role, Pruett will be responsible for developing community engagement strategies and establishing critical relationships with both members of the scleroderma community and local community leaders to best position the Foundation to deliver on its mission. 

“I am honored to continue my service for this amazing Foundation in expanded functional areas, allowing me to work more with the greater community we serve and the support programs we offer,” said Pruett. 

Since January 2022, Pruett has served as the Foundation’s Senior Director of Chapter Operations, where she partnered with Foundation chapter staff and leadership across the organization to develop and maintain coordinated program and service delivery, system integration, and ensure operational excellence. 

Pruett has nearly 20 years of experience in non-profit leadership, including extensive work with grassroots and chapter-based organizations. She started her non-profit work at ASHRAE, where she worked with chapters, members, volunteers, student programs internationally for nine years. She then went on to work for the Safe States Alliance, an injury and violence prevention association funded by the CDC, where she served as the director of membership and marketing. More recently, Pruett worked with Georgia Public Broadcasting, a public media 501 c3, where she served as the director of development operations. 

She earned her undergraduate degree from Coker College (now University), and her graduate degree from James Madison University. She is a native of Tulsa, Oklahoma, and spent most of her life in Atlanta, Georgia. She now resides in Portsmouth, Rhode Island, with her family. 

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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Bellevue, Washington – The National Scleroderma Foundation, the leading nonprofit funder of peer-reviewed research to discover the cause, understand the mechanisms, and overcome scleroderma forever, announces that the 2024 National Scleroderma Conference will be held July 19-21 in Bellevue, Washington, just nine miles east of Seattle, at the Hyatt Regency Bellevue. 

“After such a successful 2023 Conference, we are so excited to start planning a follow-up event that will reach and connect even more people affected by scleroderma,” said Mary Wheatley, National Scleroderma Foundation CEO. “Having recently realigned our chapter structure, we are now more focused than ever on serving all our constituents across the United States. By taking the conference to the Seattle area, we will be able to reach a vibrant, growing and previously underserved community while giving others the opportunity to enjoy, experience and explore the Pacific Northwest.”    

The conference agenda will include expert-led panel discussions and educational sessions, an exhibit hall with clinical research posters, various networking opportunities, and a Stepping Out to Cure Scleroderma walking event. In addition, the conference will once again be paired with the Kids Get Scleroderma, Too! program, offering education and support for children and their families.  

“The Foundation is planning an inclusive educational event for anyone impacted by scleroderma – from those who are newly diagnosed to the warriors and caregivers who have been living with the disease for decades,” said Kate Anastasia, National Scleroderma Foundation Senior Director of Mission Delivery. “Attendees will have the opportunity to hear experts in the field offer sessions about diagnosis, monitoring, treatments and the latest in research, while also making social connections and lifelong friendships.”    

More details about the National Scleroderma Conference will be shared soon as planning is currently underway. 

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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