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eLetter #829 | September 6, 2019  

2019 Conference Video Clements Raynaud

Philip Clements, M.D., M.P.H.

Raynaud and Digital Ischemia (Ulcerations)

Philip Clements, M.D., M.P.H., University of California, Los Angeles, presented "Raynaud and Digital Ischemia (Ulcerations)" at the Scleroderma Foundation's 2019 National Conference. His lecture, along with 13 other presentations, was videotaped and is now posted on the Foundation's YouTube channel.


2019 Conference Award Philanthropist Besselievre

(L-R): Cos Mallozzi, Chairman, Scleroderma Foundation, and Cyndy Besselievre, Philanthropist of the Year

Cyndy Besselievre:  Philanthropist of the Year

There is no better feeling than being able to match a person’s passion with a true need, and it’s those moments that make philanthropy an amazing thing.  What’s also true is that every organization or cause needs champions. The Scleroderma Foundation is no exception.  We need people to lead the way in giving because it creates legitimacy and paves the way to ask others for support.  In 2018, the Scleroderma Foundation marked its 20th anniversary and conceived of the "Reach for the Cure" campaign to enhance funding for scleroderma research.  You must be passionate and committed to a cause to give a lead gift during a campaign’s infancy, but those lead gifts are the building blocks that can make or break a fundraising initiative.  Cyndy Besselievre understands this type of leadership and, moreover, understood the promise that the Reach of the Cure campaign had in advancing scleroderma research.  The first major gift to the campaign came from Cyndy.  She set a bar and paved a way forward for others to give at that level, and many did.  Congratulations to the 2019 Philanthropist of the Year, Cyndy Besselievre!


2018 Capitol Hill Day Antics

Scleroderma Advocates share an elevator moment during Capitol Hill Day 2018.  (Bottom Front, L-R): David Murad, Josette Frye; (Back, L-R): Dee Burlile, Karen Steinwandt, and Danni Steinwandt.

Advocacy is About You!

Telling your story to your elected officials is what advocacy--and government--is all about.  Your Representatives and Senators can't know the issues that affect your life unless you tell them.  Right now, Scleroderma Advocates are working hard to move bill H.R. 3446, The National Commission on Scleroderma and Fibrotic Diseases Act (Rep. Peter T. King, R-NY-2), through committee.  You can help by downloading and signing the advocacy letter asking your U.S. Representative to cosponsor the bill.

H.R. 3446 is a bipartisan, budget-neutral bill that would improve coordination of National Institutes of Health-supported research related to scleroderma and other fibrotic diseases. Mail the signed letter to the Scleroderma Foundation, 300 Rosewood Drive, Suite 105, Danvers, MA 01923. Advocacy letters will be hand-delivered to each Representatives' office on Capitol Hill.


Tri State Education Graphic Cropped

Scleroderma Education

Learn local. Each chapter in the Scleroderma Foundation offers at least one scleroderma education program every year. There are seven during September and October.

  • Sept.14, 2019; Albany, NY
    11 a.m. - 3:30 p.m. (Eastern). RSVP
  • Sept. 28, 2019; Missouri
    8:30 a.m. - 3 p.m. (Central). RSVP
  • Sept. 28, 2019; Houston, Texas
    9 a.m. - 4 p.m. (Central). RSVP
  • Oct. 5, 2019; Rochester, NY
    11 a.m. - 4 p.m. (Eastern). RSVP
  • Oct. 19, 2019; Minnetonka, MN
    9 a.m. - 4 p.m. (Central). RSVP
  • Oct. 19, 2019; New York, NY
    11:30 a.m. - 4 p.m. (Eastern). RSVP
  • Oct. 27, 2019; Aurora, CO
    9:30 a.m. - 3 p.m. (Mountain). RSVP


Pulmonary Fibrosis Awareness 30 Facts 03

September is Pulmonary Fibrosis Awareness Month

During the month of September, the Scleroderma Foundation will partner with the Pulmonary Fibrosis Foundation to share 30 facts and 30 stories about pulmonary fibrosis on social media.  You can join the campaign by following @pfforg on Facebook and Twitter and with hashtag #BlueUp4PF. 


World Lung Day 2019 sq

World Lung Day 2019

"Healthy Lungs for All"

September 25, 2019, is World Lung Day, a day for lung health advocacy and action, an opportunity for us all to unite and promote better lung health globally.   Respiratory diseases impose an immense worldwide health burden.


TOSS scleroderma self management

Taking Charge of Systemic Sclerosis

Often, persons with scleroderma do not know other people with the disease. They might live in a state where there is no chapter of the Scleroderma Foundation, or their community might not have a support group. This web based self-management program was designed to help you learn about scleroderma, to manage your symptoms, and to learn strategies to help you advocate for yourself.

Knowledge and advocacy skills need to be continually woven, like a basket, into one's daily life. Register today to gain skills and confidence to manage systemic sclerosis (SSc) symptoms, and to develop strategies to advocate for yourself. Peer Mentors from the program will empower you to take control of your life and your healthcare.



Stepping Out Logo 2018 Be Part of the Cure - Web

2019 Stepping Out Denver Woman More than Scleroderma

Be Part of the Cure
Join Stepping Out yo Cure Scleroderma

Make a difference in the lives of whole families impacted by this life-threatening disease.  Only by raising money can we provide emotional support and disease education to address the needs of individuals with scleroderma today, while fostering research to discover the cause, understand the mechanism, and overcome the disease forever.

Find a Stepping Out to Cure Scleroderma fundraising walk or 5K run near you.  Ask your family, friends, and coworkers to join your walk team and to help you raise money using effective online fundraising tools.

Below are links to upcoming walks.  Online registration typically closes a day or two before the walk date, but you may register on-site on the day of the walk.

Sept. 7:   Springfield IL
Sept. 8:   North Shore MA, Philadelphia PA
Sept. 14: Snohomish WA
Sept. 15Westfield MA
Sept. 21Dixon IL
Sept. 29Boston MA
Oct.    5:  Kansas City MO


Discover Understand Overcome square

Research Grant Application Deadline: September 16

If you are involved in scleroderma research or research that involves fibrotic diseases, the Scleroderma Foundation offers two distinct awards: the New Investigator Grant and the Established Investigator Grant.

Funding choices are based on scientific merit and are made by a peer-review panel that follows the method used by the National Institutes of Health. 

Grant applications must be received by 5 p.m. Eastern Time, Monday, September 16, 2019, in the Scleroderma Foundation's National Office. Postmarks do not satisfy the requirement.

APPLY OR LEARN MORE (800) 722-4673

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Disclaimer: The Scleroderma Foundation in no way endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.

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