Support Education Research

Please leave this field empty

Scleroderma Foundation
Homepage | Forward to a Friend | Make a Donation
eletter banner.jpg
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.

WATCH VIDEO

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!

AWARDS

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.

DOWNLOAD & SIGN ADVOCACY LETTER

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

CALENDAR

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. 

LEARN MORE

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.

LEARN MORE

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.

SELFMANAGESCLERODERMA.COM

 

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

ALL WALKS

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

 
QUICK LINKS
 
Advocacy
Contact Us
Become a Member
About Scleroderma
Calendar of Events
Online Chat
Store
Make a Gift
Home
 
SOCIAL MEDIA
 
Facebook
Twitter
Instagram
YouTube
 
 
SPONSORS
 
Diamond National Sponsor

Actelion Plain

 

 
Platinum National Sponsor

Boehringer Ingelheim Plain

 

 
Corporate Sponsors
Bayer National Sponsor

Reata Logo.jpg

United Therapeutics Logo

CSL Behring logo

Corbus Pharmaceuticals Logo

 

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.

Powered by Blackbaud  Unsubscribe | Visit our web site | Contact Us | Donate
300 Rosewood Drive, Suite 105, Danvers, MA 01923 tel: 800-722-HOPE (4673)
© 2019 All rights reserved.