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Scleroderma Foundation
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eLetter #837 | November 1, 2019  

PH Awareness Month 2019


Pulmonary Hypertension Awareness Month

November is pulmonary hypertension (PH) awareness month and the Pulmonary Hypertension Association has prepared a social media toolkit you can use to generate awareness of this disease that affects so many with scleroderma.

"PHaces of Hope" is the 2019 theme. Visit phassociation.org to read inspiring stories of individuals with PH, their caregivers, and health care professionals. To share your PH story, fill out the PHaces of Hope form.

TOOLKIT

vote

Handicapped Voter Parking Sign


Voting Accessibility

Tuesday, November 5 is an off-year election day, meaning there are no congressional races or a presidential election. However, there are gubernatorial elections in Kentucky, Louisiana, and Mississippi. And, state legislative elections in Louisiana, Mississippi, New Jersey, and Virginia. Not to mention many local mayoral races and citizens initiatives. Regardless of your political affiliation, voting is not only a right it's an obligation. Voters with a disability have the right to:

  • Vote privately and independently
  • Have an accessible polling place with voting machines for voters with disabilities

You may either:

  • Seek assistance from workers at the polling place who have been trained to use the accessible voting machine, or
  • Bring someone to help you vote

You may request your local election officials to tell you about any voting aids, voting assistance, and absentee ballot procedures that are available.

Ensure your right to accessible elections. For more information, contact the U.S. Election Assistance Commission: (866) 747-1471, clearinghouse@eac.gov.

READ MORE

YouTube 2019 Frech Immunizations

Tracey M. Frech, M.D., M.S.


The Importance of Immunizations in Scleroderma
2019 National Conference Video

Tracy M. Frech, M.D., M.S., University of Utah, Salt Lake Veterans Affairs Medical Center, presented "The Importance of Immunizations in Scleroderma" at the Scleroderma Foundation's 2019 National Conference in Chicago, Illinois.  Her presentation was videotaped and is now posted on the Foundation's YouTube channel, along with 13 others from the July conference.

WATCH VIDEO

DC Capitol Dome Cherry Blossoms portrait


It's Easy to Advocate!

Go to scleroderma.org/advocacy then sign, scan, and email the advocacy letters asking your U.S. Representative and Senators to co-sponsor H.R. 3446 and S. 2477.  The bills are identical and are titled National Commission on Scleroderma and Fibrotic Diseases Act of 2019.  They are bipartisan and budget-neutral, and are designed to improve coordination of research related to scleroderma and other fibrotic diseases already funded by the National Institutes of Health.

The signed letters should be emailed to advocacy@scleroderma.org, or sent via U.S. Mail to: Scleroderma Foundation, ATTN: Advocacy, 300 Rosewood Drive, Suite 105, Danvers, MA 01923-1389.

READ MORE

Traci Stewart RN MSN CHFN Heartland Patient Ed 2019

Traci Stewart, R.D., M.S.N., C.H.F.N., at Heartland Chapter Sclero-What?


Scleroderma Education Programs

Learn Local. Each chapter in the Scleroderma Foundation offers at least one scleroderma education program every year. There are two remaining in 2019 in two different states.

(Please Note: The Rocky Mountain Chapter education program scheduled for October 27 was postponed because of weather.  A new date will be announced.)

CALENDAR

HealthCare.gov logo


November 1 is Open Enrollment for HealthCare.gov Coverage

Starting November 1, 2019, you can log in to HealthCare.gov, fill out an application, compare plans and premiums, and enroll.

Enter your zip code to determine whether your state has its own healthcare connector or HealthCare.gov.  

2020 PLANS & PRICES

TOSS scleroderma self management


Taking Charge of Systemic Sclerosis (TOSS)

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. "Taking Charge of Systemic Sclerosis (TOSS) is a web-based self-management program <selfmanagescleroderma.com> 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 will empower you to take control of your life and your healthcare.

LEARN MORE

2020 Conference Seattle Save the Date


National Patient Education Conference
Save the Date: July 17-19, 2020

The Scleroderma Foundation's National Patient Education Conference will take place in the Seattle, Washington area. 

Online registration will open Mid-February 2020.  Scholarship applications will open prior to that at the beginning of February.  

The conference is a remarkable experience where individuals with scleroderma and their caregivers, including children and teens, can learn about scleroderma from world-renowned experts and meet others who are coping with the disease and succeeding in life.  

LEARN MORE

Scleroderma Canada Conference

Scleroderma Canada 2020 Conference

Clinical Trial Opportunity

Belimumab and Rituximab Combination Therapy

Overview

  • This is a randomized, placebo-controlled trial, where patients will be randomized in a 2-to-1 fashion to treatment with rituximab 1000 mg every other week for two infusions followed by weekly belimumab (200 mg subcutaneously) or placebo infusions followed by weekly subcutaneous placebo injections.
  • All Patients will receive background mycophenolate mofetil
  • Study duration: 15 months

Inclusion Criteria

  • Age: 18-80 years
  • Classification of systemic sclerosis (SSc), as defined using the 2013 American College of Rheumatology/European Union League Against Rheumatism classification of SSc.
  • Diffuse skin involvement
  • Disease duration of less than or equal to 3 years as defined by the date of onset of the first non-Raynaud’s symptom.
  • A modified Rodnan Skin Score (mRSS) of > 14

Exclusion Criteria

  • Prior use of B-cell depleting therapies
  • FVC < 45%
  • DLCO < 30%

CONTACT

Hospital for Special Surgery:

Liza Morales, Research Coordinator 
(212) 774-2561, moralesli@hss.edu

Beemnet Amdemicael, Research Assistant
(212) 774-2048, amdemicaelb@hss.edu

 
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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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