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Scleroderma Foundation
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eLetter #838 | November 8, 2019  

Peter Hountras MD UCHealth


Ask the Expert About CTEPH
FACEBOOK LIVE: Wed., Nov. 13, 1:30 p.m. Eastern

November is Pulmonary Hypertension Awareness month and the Pulmonary Hypertension Association is hosting a Facebook Live event with Peter Hountras, M.D., from UCHealth at University of Colorado Hospital for a Q&A regarding chronic thromboembolic pulmonary hypertension, or CTEPH, which is a treatable form of pulmonary hypertension caused by old blood clots in the lungs. Dr. Hountras will offer an overview of CTEPH and take your questions. This chat is for everyone who is interested in this disease as well as those who have specific questions.

FACEBOOK LIVE

Ian Bartlett PHA Awareness 2019


CTEPH Awareness Day
FACEBOOK LIVE: Wed., Nov. 13, 3 p.m. Eastern

Chronic thromboembolic pulmonary hypertension (CTEPH) is a form of pulmonary hypertension (PH) caused by old blood clots in the lungs, also known as pulmonary emboli.  It can affect anyone, at any age.  Ian Bartlett is one such person, and on CTEPH Awareness Day, Nov. 13, he'll share his personal journey with CTEPH and what gives him hope via Facebook Live and the Pulmonary Hypertension Association.

FACEBOOK LIVE

YouTube 2019 Khanna Pulmonary Hypertension

Dinesh Khanna, M.D., M.S.


Pulmonary Hypertension in Scleroderma
2019 National Conference Video

Dinesh Khanna, M.D., M.S., University of Michigan Scleroderma Center, presented "Pulmonary Hypertension in Scleroderma" at the Scleroderma Foundation's 2019 National Conference in Chicago, Illinois.  His presentation was videotaped and is now posted on the Foundation's YouTube channel, along with 13 others from the July conference.

WATCH VIDEO

Lesley Saketkoo M.D., M.P.H.

Lesley A. Saketkoo, M.D., M.P.H.


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.

 

CALENDAR

Advocacy 2018 Capitol Hill Day Steinwandt


Okay, I Voted. Now What?

Advocacy comes next, and, it's easy! Go to scleroderma.org/advocacy then sign, scan, and email the H.R. 3446 and S. 2477 letters asking your U.S. Representative and Senators to be co-sponsors. 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 that is 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

Giving Tuesday 2019 Deborah R sq


Giving Tuesday is December 3

This year, on Giving Tuesday, know the face of scleroderma and give hope.  

"I am proud that even though
I don't always feel up to it,
I have been able to keep going."
Deborah R.  

Give Hope on Giving Tuesday

HealthCare.gov logo


November is Open Enrollment for HealthCare.gov Coverage

As of November 1, 2019, HealthCare.gov is open for enrollment.  Log in to 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

Ticket to Work - WISE 2018


Ticket to Work and Employment Resources for Veterans
WEBINAR: Wed., Nov. 20, 3 - 4:30 p.m. Eastern

Ticket to Work resources can help veterans with disabilities prepare for successful post-service careers. Veterans who receive Social Security disability benefits should join ChooseWork for the next Work Incentive Seminar Events (WISE) webinar to learn more about resources and supports that can help veterans enter or re-enter the civilian workforce.

CHOOSEWORK

NIH NCCIH Pain Considering Complementary Approaches


Pain: Considering Complementary Approaches

The National Center for Complementary and Integrative Health of the National Institutes of Health has published an eBook, titled "Pain: Considering Complementary Approaches."  Included are health care approaches developed outside of mainstream Western, or conventional, medicine; typically mind and body practices, or natural products.  The eBook can be downloaded from the center's website at the link below. 

READ MORE

Clinical Trial Opportunity

Forbius logoSafety and Tolerability Study of AVID200, a Novel TGF-beta 1 & 3 Inhibitor, in Patients with Diffuse Cutaneous Systemic Sclerosis

AVID200-01 (NCT03831438) is a Phase One trial designed to evaluate the safety, tolerability, and preliminary efficacy of AVID200 in diffuse cutaneous systemic sclerosis (dcSSc) patients. Currently the trial is being conducted at four centers in the United States: University of Pittsburgh Medical Center, Hospital for Special Surgery, UCLA, and University of Pennsylvania, with more centers expected to be open soon.

To participate in the trial, the following criteria must be met:

  • Be at least 18 years old
  • Be classified as having SSc with a total ≥ 9 according to the American College of Rheumatology/European League Against Rheumatism (ACR/EULAR) criteria for the classification of SSc
  • Have diffuse cutaneous SSc (dcSSc) subset
  • Disease duration < 5 years since the onset of first SSc manifestations (other than Raynaud's phenomenon) at the time of enrollment
  • Have an MRSS ≥ 15, and with a score that has not decreased by > 5 points in the past 2 months (8 weeks)
  • Have a skin score ≥ 2 on at least one forearm

READ MORE: clinicaltrials.gov and forbius.com.

 
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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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