Forgot password?
   Please leave this field empty
Support Education Research
Please leave this field empty
Scleroderma Foundation
Homepage | Forward to a Friend | Make a Donation
eletter banner.jpg
eLetter #891 | November 13, 2020  

Scleroderma Virtual University Fall Series

Fabian Mendoza Ballesteros MD
Fabian Mendoza-Ballesteros, M.D.

El Seminario Web en Español Concluye la Serie de Otoño de la Universidad Virtual, el 18 de Noviembre

Spanish Language Webinar Concludes Virtual University Fall Series, November 18

El seminario web final de la serie de otoño de educación para pacientes de la Universidad Virtual sobre Esclerodermia se presentará en Español.

Tratamientos Disponibles y lo que a un nos Falta por Descubrir, presentado por Fabian Mendoza-Ballesteros, M.D., Associate Director Scleroderma Center, Thomas Jefferson University.

Esta charla se centrará en los tratamientos disponibles para los que viven con la esclerodermia. También echaremos un vistazo al futuro de la investigación y el tratamiento de la esclerodermia.

REGISTRARSE

YouTube logo Little Guy overlay

VIDEO: All Scleroderma Virtual University Webinars Posted on YouTube

Watch video recordings of the full fall series of Scleroderma Virtual University on the Foundation's YouTube channel.

WATCH

Trophy Star

Recognition for Outstanding Service

Every year at the National Patient Education Conferene, the Scleroderma Foundation takes time to recognize individuals and chapters for their outstanding service during the preceding year. Sadly, the pandemic has taken away the opportunity thank people in person, and so we present to you here in the eLetter the 2020 Chapter Awards.

Sheryl Bishop is the 2020 Chapter Volunteer of the Year. Sheryl has been a dedicated volunteer for almost 20 years. In addition to being a fundraising champion, she manages he chapter’s social media posts—ensuring they engage the scleroderma community. She raises awareness—from getting her hometown to declare June as Scleroderma Awareness Month to securing billboard space to promote scleroderma awareness, to being the loudest cheerleader at the Southern California Chapter’s awareness event at The Price Is Right.

The Michigan Chapter is the 2020 Outstanding Chapter Patient Support awardee. The chapter embraced virtual education events before it became a necessity. By supplementing in-person patient education with a variety of webinars, they fulfilled their goal to have a greater reach for patients and caregivers. Their outreach includes identification and support efforts of the psycho-social needs, specialized pediatric programming as well as male-related disease specific complications.

Demi Montgomery of the Ohio Chapter is the 2020 National Advocate of the Year. Never short on creative ideas to raise awareness to advance our legislative priorities forward. Active at the local, state, and national level, she was the driving force behind efforts to secure state awareness proclamations in every state. It was her comments during national advocacy committee meetings that helped us refocus our messaging to link awareness and advocacy in new ways.

The South Carolina Chapter’s Annual Amy K. Parrish Patient Education Conference is awarded the 2020 Outstanding Education Program. The chapter recently celebrated the 10th anniversary of its annual event named for the chapter’s founding president. Highlights of the annual event include a tour of her research lab by Carol Feghali-Bostwick, Ph.D., and some serious southern hospitality with shrimp and grits for lunch.

The Tri-State Chapter is the 2020 Outstanding Chapter Awareness awardee. The chapter consistently keeps awareness and advocacy as integral parts of their communication and outreach. They maintain a strong presence in community events and health fairs throughout the chapter region. With a long history of creating and sharing excellent content, staff member Candice Snider upped their game in the last year with an amazing social media presence with very engaging content.

The Texas Bluebonnet Chapter is the 2020 Chapter of the Year in recognition of overall excellence in advancing the mission of the Scleroderma Foundation. The chapter has faced some difficult challenges and obstacles and persevered to remain focused on our shared mission. The chapter has an active presence throughout its region with support groups, education events and effective advocacy efforts.

Michigan Parents Online Group November 2020

Parents of Children with Scleroderma

Online Support Group: December 2, 2020, 7:30 - 9 p.m. Eastern

Do your family members, friends or even strangers offer advice about your child’s scleroderma? Are you unsure how to respond to these remarks? Join us for an online support group on December 2 from 7:30-9:00 p.m. to learn tips and tools to better navigate these comments. We’ll start with welcome remarks and an opening icebreaker, move on to an educational session with helpful tips, and end with a closing mindful moment. Register now and find support and hope in the community.

ZOOM

Caregivers Action Network Rare Caregivers

November is National Family Caregivers Month

Rare Caregivers is a comprehensive online guide produced by the Caregiver Action Network to address the distinct needs of family caregivers of loved ones with rare diseases.

  • Caregiving Information You Can Use Now
  • Take Care of Yourself
  • Family Matters
  • Feelings You May Have
  • Other Places to Turn for Help

RARE CAREGIVERS

 Advertisement
United Therapeutics PAH Initiative
 

Ticket to Work - WISE

Debunking the Three Biggest Myths About Disability Benefits and Work

WEBINAR: November 18, 3 - 4:30 p.m. Eastern Time

Have questions about disability benefits and work? ChooseWork will debunk myths and provide valuable information in this month’s Work Incentives Seminar Event (WISE) webinar. 

If you receive Social Security disability benefits (SSI or SSDI) and want to work, mark your calendars for November 18 at 3 p.m. ET to learn more! Register today!

REGISTER

 myPHteam PAH vs PH

PAH vs. PH: What's the Difference?

Pulmonary hypertension affects about 10 - 20% of the general population. Pulmonary arterial hypertension is quite rare, with just 500 to 1,000 new cases diagnosed each year in the U.S. Learn more about the differences between the two.

myPHteam

SF Logo Standard JPG

 

MSAB COVID-19 eLetter Graphic

COVID‑19 Information & Recommendations

From the Scleroderma Foundation's Medical & Scientific Advisory Board Leadership Committee
Reviewed July 1

The Foundation's Medical & Scientific Advisory Board (MSAB) Leadership Committee fully endorses recent recommendation by the American College of Rheumatology (ACR) in their “COVID-19 Clinical Guidance for Patients with Rheumatic Diseases” draft summary, which states that individuals who have rheumatic diseases, including scleroderma, who test positive for COVID-19 should temporarily discontinue sulfasalazine, methotrexate, leflunomide, immunosuppressants, non-IL-6 biologics and JAK inhibitors. The ACR COVID-19 Clinical Guidance Task Force also recommends that those who have confirmed COVID-19 may continue with anti-malarial therapies—namely hydroxychloroquine and chloroquine—and, in select circumstances, IL-6 inhibitors.

Information and recommendations from the Foundation's MSAB regarding COVID-19 and scleroderma are posted at www.scleroderma.org/covid19. This "living document" was most recently reviewed on July 1. Please check it from time to time for additional updates.

COVID‑19

Research Participation Opportunity

Food Choices and Scleroderma

Many people living with scleroderma perceive that what they eat influences their symptoms related to scleroderma. This study is inspired by people attending the Scleroderma Foundation Patient Conference who expressed a desire for research such as this to be conducted.

If you are a person with scleroderma and you experience related gastrointestinal symptoms such as bloating, cramping, nausea, vomiting, regurgitation, diarrhea, constipation etc., you may be interested in participating in this research study.

This is an international study run by the New Orleans Scleroderma Patient Care and Research Center (Lesley Ann Saketkoo, MD, MPH, Tulane University Lung Center) using telephone counseling and online questionnaires to assess the impact of various diets that might impact symptoms in scleroderma.

Some facts about the research study:

  • The diet lasts for 4 weeks only
  • Participants must be 18 years or older
  • You are not able to choose your diet
  • We can’t tell you what is special about your diet until after the study
  • The study is conducted by telephone and online
  • There are questionnaires to fill-out online or by telephone just before you start the study and during the last week of your diet
  • All study diet options are known to be safe and healthy and should not affect weight gain or loss
  • The study diets are guided by general instructions regarding food choices; there are no specific ‘assigned meals’; however we may provide recipes that you might be interested that fit with your diet
  • Participants cannot have a positive test for celiac disease; as this may confuse symptoms related to celiac versus scleroderma
  • If participants are already on a special type of diet; if they desire to participate they may have to stop that diet for a few weeks before starting the study diet. (Some exceptions to this are diabetic diets, low cholesterol or heart diets. These diets are allowed.)
  • If you are interested in participating, you will be asked to provide consent and allow us to contact your doctor to send us a few recent lab results
  • There is no monetary compensation for participation.
  • We hope to understand if any diet aspects affect a broad range of symptoms related to scleroderma.
  • You will be informed of the study results as soon as the analysis is complete!

If you are interested in participating: email CTDresearch@tulane.edu with your name and telephone number. Dr. Saketkoo or Dr. Kelly Jensen will call and/or email you.

Clinical Trial Update

Corbus Pharmaceuticals Presents Additional Data from RESOLVE-1 Study in Systemic Sclerosis

In a November 9, 2020, press release Corbus Pharmaceuticals announced the release of additional data from the RESOLVE-1 Phase 3 study of lenabasum for the treatment of systemic sclerosis. 

“We are encouraged by the post-hoc analyses pointing to lenabasum’s therapeutic potential to reduce decline in lung function in people with systemic sclerosis who have been on longer-term immunosuppressant drug therapy,” said Yuval Cohen, Ph.D., Chief Executive Officer of Corbus. “We believe these findings offer a rationale for additional clinical development of lenabasum, a non-immunosuppressive agent, that could address lung function decline in systemic sclerosis patients.”

PRESS RELEASE

 Advertisement
Kadmon Trial 2020 kadmonscleroderma.com
 
 
 
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 Sponsors

Actelion Plain

Boehringer Ingelheim Plain

 

Corporate Sponsors

Corbus Pharmaceuticals Logo

Horizon Therapeutics 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)
© 2020 All rights reserved.