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Scleroderma Foundation
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eLetter #828 | August 30, 2019  

Labor Day 2019


Labor Day, September 2, 2019

The National Office will be closed in observance of the Labor Day holiday.

Check scleroderma.org if you're looking for the location of a support group or a scleroderma research and treatment center.  The website also has a wealth of information about the disease and symptom management.  

SCLERODERMA.ORG

Red Cross FEMA Emergency Plan Disabilities


Disaster Safety for People with Disabilities

A helpful emergency planning tool with tips specificially for people with disabilities is available from the American Red Cross. 

The guide was co-authored by the American Red Cross, the Department of Homeland Security, and the Federal Emergency Management Agency (FEMA).  

It includes a link to download a free emergency app for a smart phone.  

READ MORE

YouTube 2019 Localized York

Michael York, M.D.


Localized Scleroderma: Diagnosis and Treatment

Michael York, M.D., Boston University School of Medicine Scleroderma Program, was the featured presenter for the Localized Scleroderma lecture at the Scleroderma Foundation's 2019 National Conference. His lecture on "Diagnosis and Treatment" was videotaped, along with 13 other presentations, and is now posted on the Foundation's YouTube channel.

WATCH VIDEO

Greg Cohen 2019 LA Marathon

Greg Cohen


Messenger of Hope

This year, two awards were presented in the Messenger of Hope cateogry. One award went to Greg Cohen of Califonria. Shortly after his diagnosis, Greg and his wife, Arielle, raised almost $4,000 by teaching a yoga class that included a scleroderma awareness component. In 2018, Greg increased his impact by running the L. A. Marathon and raising more than $5,000. Greg has a blog that emphasizes the importance of diet and exercising while living with an autoimmune disease. People from all over the world send Greg messages and videos that validate that his words and lifestyle motivate them to eat better and exercise more. Greg is a listening ear to newly diagnosed men and women. He meets with patients and families trying to cope with the challenges of a scleroderma diagnosis. In 2018, he joined the Southern California Chapter Board of Directors determined to make a positive impact in scleroderma with awareness, support, and education, and raising money to find a cure. In Greg’s own words, “I ran because I am not defined by my illness and I will never stop moving forward.” Congratulations Greg!

AWARDS

Advocacy Capitol Hill 2018 Group

(L-R): Christina Loccke (front), Amy Gietzen, Advocate Man, Rosemary Markoff, Aide Person
Capitol Hill Day 2018


What Can I Do?

You can help move bill H.R. 3446, The National Commission on Scleroderma and Fibrotic Diseases Act (Rep. Peter T. King, R-NY-2), through committee 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

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

Tri State Education Graphic Cropped


Albany, New York Scleroderma Forum

Saturday, September 14, 2019; 11 a.m. - 3:30 p.m. ET; 1741 Western Ave., Albany, NY

The Tri-State Chapter is hosting a scleroderma education forum in Albany, New York at the Westmere Fire Headquarters.  Topics and Speakers:

  • The Diagnostic Pathways to Scleroderma Project, Patricia Fennell, M.S.W., L.C.S.W.-R.
  • Scleroderma Renal Crisis Project, Richard, NGO
  • Pulmonary Hypertension Project, Ana Maheshwari
  • Medications in Scleroderma, Jessica Farrell, Pharm.D.

RSVP TODAY

2019 Pulmonary Fibrosis Awareness Month


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 using hashtag #BlueUp4PF. 

LEARN MORE

stepping out walkers water

Stepping Out Logo 2018 Be Part of the Cure - Web


Be Part of the Cure, Start Stepping Out!

When you walk you 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 event near you. Ask your family, friends, and coworkers to join your walk team and to help you raise money.

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 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

Clinical Trial Update

Emerald Health Pharmaceuticals logoEmerald Health Pharmaceuticals Completes First-In-Human Clinical Study of Novel Oral Treatment for Multiple Sclerosis and Systemic Scleroderma

Emerald Health Pharmaceuticals Inc. (EHP), a clinical-stage company developing medicines based on cannabinoid science, announced on August 26, 2019, the successful completion of its first-in-human Phase I clinical trial evaluating the safety, pharmacokinetics, pharmacodynamics and exploratory biomarkers of its lead product candidate, EHP-101, an oral formulation of a patented new chemical entity (NCE) derived from cannabidiol (CBD). This Phase I clinical trial was designed to enable Phase II clinical trials assessing the safety and efficacy of EHP-101 in the treatment of multiple sclerosis (MS) and systemic scleroderma (SSc) patients. Start-up activities are underway for the initiation of Phase II clinical studies of EHP-101 in MS and SSc patients, with initiation of the first Phase II study expected before the end of 2019.

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

Several lines of evidence place TGF-β, a potent pro-fibrotic cytokine, at the center of the pathogenesis of systemic sclerosis (SSc). AVID200 is a novel inhibitor of TGF-β ligands.

AVID200-01 (NCT03831438) is a Phase 1 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 minimum 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 a 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 at clinicaltrials.gov (NCT03831438) 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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