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eLetter #810 | April 19, 2019  

marie coyle


The Passing of a Founder

The scleroderma community lost one of its most ardent and dedicated champions a few weeks ago when Marie Coyle of Peabody, Massachusetts, passed away at the age of 87 on April 13 after a short illness and age-related complications.  Marie was diagnosed with linear scleroderma (en coupe de sabre) at age 12. Marie wanted to help others cope with their diagnosis. She placed an ad in a Boston-area paper seeking others with scleroderma to form a support group. She met two other women living with scleroderma and they took the necessary steps to obtain nonprofit status. The Scleroderma Federation emerged from that effort, and Marie served two terms as President. In 1998, Marie played a pivotal role in bringing together the Scleroderma Federation and the United Scleroderma Foundation to form the present-day Scleroderma Foundation, with an emphasis on Peer-Review Research Program.  Our community owes her a debt of gratitude for her 45 years of remarkable service.

support_groups


New Support Group in Tampa, Florida

A new scleroderma support group has been formed to serve the area of Tampa, Florida. Led by volunteer Arlene Sweeney-Cornwall, the group meets the first Saturday of every month, 10 a.m. to 12 Noon at the New Generation of Faith Ministries, located at 8214 Peterson Road in Odessa, Florida.  

If you live in the Tampa area, contact Arlene at nurse2die4@hotmail.com, (813) 442-6133

Jet Ski for Julia Hope Raiser


Raising Hope on a Jet Ski

Despite having scleroderma, Julia is a lucky eight-year-old girl, because her great uncle, Thomas Cronin, has her back.  Thomas is raising money to fund research to discover the cause, understand the mechanism, and overcome scleroderma forever by riding his Jet Ski, along with his friend, Jason, 3,500 miles over open ocean from Shelter Island, N.Y. (Long Island) to Key West, Florida, to the Bahamas, and back to Shelter Island.  Their ultimate fundraising goal is $50,000 for research!

Thomas and Jason plan to take off at 12 Noon, June 30, 2019.  Wish them luck with a donation.

www.scleroderma.org/goto/JetSkiforJulia

2019 National Conference Chicago Design 3


Take Advantage of the Early Bird Discount for National Conference
July 19-20-21, Chicago, Illinois

The early bird discount ends May 22.  There's plenty of time to sign up now, but don't wait.  Register today for the Scleroderma Foundation's National Patient Education Conference in Chicago. 

Watch a brief video about the conference.

Register today

FDA Public Meeting April 2019


FDA Public Meeting - Patient Perspectives on the Impact of Rare Diseases: Bridging the Commonalities

The U.S. Food & Drug Administration (FDA) will host a public meeting on April 29 to obtain patients' and caregivers' perspectives on the impacts of rare diseases on daily life and to assess commonalities that might help the Agency and medical product developers further understand and advance the development of treatments for rare diseases. Patients and caregivers are strongly encouraged to participate either in-person or remotely.

  • Monday, April 29, 1 - 5 p.m. E.T. 
  • FDA's White Oak Campus, 10903 New Hampshire Avenue, Building 31 Conference Center, Room C, Silver Spring, Maryland 
  • Click here to register by April 15

If you are unable to attend in person, submit comments to the docket or join by webcast. To learn more, visit the meeting page or view the Federal Register notice.

day planner


Scleroderma Study

A Registered Nurse is interested in knowing about your experience living with systemic scleroderma.  There will be two sets of interviews:

  • Women who have been living with systemic scleroderma for 1-6 years
  • Women who have been living with systemic scleroderma for 7 or more years

If you join this study, a recorded interview will take place, and you will be asked questions about living with scleroderma and you will be asked to share your story.  The interview may take place by telephone if prefered.  This study may help nurses better understand and take care of people with scleroderma.

If interested in learning more about the study please contact: Donald Miller, M.S.N., R.N., ddmiller@uwm.edu, (414) 704-7497.  Donald Miller is with the University of Wisconsin College of Nursing. 

Raynaud Phenomenon Brochure 2019


Raynaud Phenomenon

An updated brochure (1/19) that provides information about Raynaud Phenomenon has been posted on the Scleroderma Foundation website.
scleroderma.org > patients & newly diagnosed > brochure downloads

Raynaud phenomenon is the exaggeration of the normal response to cold temperatures and emotional stress.  The brochure reviews who gets Raynaud, what causes it, how it is diagnosed, and how it is treated.

The Scleroderma Foundation thanks Frederick Wigley, M.D. for his assistance in the preparation of this brochure.

Read this and other detailed brochures about scleroderma symptoms at scleroderma.org/downloads.

myPHteam Beginner's Mind


Beginner's Mind - Not Knowing It All When Living with Pulmonary Hypertension

Living with a chronic condition can be difficult and even a burden, but also an opportunity to rid yourself of what you think you know.  "People don't get it until they get it." That is so true about pulmonary hypertension.

Gain perspective from other members' experiences

Stepping Out Logo 2018 Be Part of the Cure - Web


Where are You Stepping Out?

Stepping Out to Cure Scleroderma is a fundraising event that brings together family and friends of those who have scleroderma. The monies raised by individuals and teams are used to advance the Scleroderma Foundation's three-fold mission of support, education, and research.

April 27:  Houston, TX
April 28:  Worcester, MA
May 04:  Ventnor, NJ
May 18:  Columbia, MD & Westbrook, ME
May 19:  Sherman Oaks, CA

Find more walks at scleroderma.org/steppingout

RFTC Carol Feghali-Bostwick sq


Reach for the Cure

“Funding will solve the problem because there is no research without funding. And without research in the lab of scientists such as myself and others in the scleroderma community there is no drug development, because the initial discoveries start in our laboratories and then ultimately get developed by the larger companies. And without funding there is no pipeline of young investigators entering the field,”

Carol Feghali-Bostwick, Ph.D., Medical University of South Carolina.

The need is great. The time is now. The choice is yours. Please give generously: scleroderma.org/reachforthecure

 
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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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