Support Education Research
Please leave this field empty
Scleroderma Foundation
Homepage | Forward to a Friend | Make a Donation
20th anniversary Scleroderma Foundation logo 72 dpi banner
eLetter #788 | November 16, 2018  

Thanksgiving Thank You 2018

 

Thanksgiving Holiday

The Scleroderma Foundation national office will be closed on Thanksgiving Day, November 22, and Friday, November 23.  During this time, calls to the info line, (800) 722-4673, will go to voice mail and will be answered Monday, the 26th.

thanks /THaNGks/ noun:
An expression of gratitude.
give /giv/ verb (present participle) giving:
Providing love or other emotional support; caring.

Thank you! And, we can’t say it enough.
Your kind generosity toward everyone affected by scleroderma and your unwavering dedication to our shared mission of support, education, and research moves us deeply. With great gratitude, we wish you and yours a very Happy Thanksgiving!

scleroderma.org

YouTube 2018 Mayes Scleroderma 101

 

Video:  "Scleroderma 101"

At the 2018 National Patient Education Conference, we filmed a presentation by Maureen Mayes, M.D., M.P.H., University of Texas, Houston, on the different kinds of scleroderma (localized versus diffuse, systemic versus limited systemic forms). Dr. Mayes also discussed the meanings of typical scleroderma autoantibodies such as Scl 70 (Scleroderma-70) and the centromere antibody; and what they mean for predicting organ involvement. She also reviewed which tests are usually done to monitor organ involvement and what current and future medications are routinely used.

watch this video & others from the 2018 conference

University of Texas Houston Scleroderma Center


Research & Treatment Centers

University of Texas Scleroderma Clinic

The Scleroderma Foundation has formal affiliations with nearly 50 scleroderma research and treatment centers in the U.S. To be designated as a center, a clinic must:

  • Demonstrate expertise in the care of patients with scleroderma.
  • Conduct scleroderma research (clinical and/or observational and/or laboratory-based).
  • Conduct educational activities about scleroderma, and provide information about the advances in the care and treatment of patients with scleroderma to health care professionals and the public.

In the Houston, Texas, area, go to the University of Texas Health Scleroderma Clinic.

Journal of Rheumatology Logo
 

New Features for Measuring Disease Activity in Pediatric Localized Scleroderma

The Journal of Rheumatology reported on a study to identify clinical features that define disease activity in pediatric localized scleroderma and to determine their specificity and importance.  The results will help guide development of a sensitive, responsive activity tool to improve care of patients with localized scleroderma.  

read more

Low Income Home Energy Assistance Program LIHEAP logo
 

Low Income Home Energy Assistance Program (LIHEAP)

The Low Income Home Energy Assistance Program (LIHEAP) helps keep families safe and healthy through initiatives that assist families with energy costs.  LIHEAP provides federally funded assistance in managing costs associated with home energy bills, energy crises, and weatherization and energy-related minor home repairs.

read more

myPHteam logo
 

myPHteam

Pulmonary Hypertension is high blood pressure in the arteries that carry blood from the right side of the heart to the lungs. It's considered a lung disease, while hypertension is considered a cardiovascular disease.

Read more about the history and prevalence of PH

RFTC Carol Feghali-Bostwick sq

Carol Feghali-Bostwick, Ph.D.


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

On Giving Tuesday, November 27, please give generously as together we reach for the cure

watch the reach for the cure video

Voice Fall 2018 Cover

Winter Voice Published Online Only

If you are a subscriber to Scleroderma Voice, you should note that the winter edition (November) will be published online only.  By publishing one issue online, the Foundation reduces production costs and can use that savings toward other parts of our mission. 

Subscribers (Foundation members) will receive an email with a link to read the magazine online.

If you are a paid subscriber, please provide your current email address to ensure that you receive access to the winter Voice.

Contact webmaster@scleroderma.org,
or call (800) 722-4673.

 
Quick Links
Advocacy
Contact Us
Become a Member
About Scleroderma
Calendar of Events
Online Chat
Store
Make a Gift
Home
 
facebook_32.png
twitter_32.png
2016 Instagram
Youtube_32x32.png
 

Actelion JSN 2018


Boehringer Ingelheim 2018 Platinum National Sponsor


Bayer 2018

2018 Gilead

 

United Therapeutics 2018 Bronze Conference Sponsor

reata_horizontal_logo-2018-Bronze Natl


Arena Pharmaceuticals 2018 Corp Conf Sponsor

 

Corbus 2018 Corp Conf Sponsor

 

Genentech 2018 Corp Conf Sponsor

 

   

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.