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Scleroderma Foundation
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eLetter #830 | September 13, 2019  

2019 Conference Video Farrell Medications

Jessica Farrell, Pharm.D.


Medications in Scleroderma

2019 National Conference Video

Jessica Farrell, Pharm.D., Albany College of Pharmacy and Health Services, presented "Medications in Scleroderma" at the Scleroderma Foundation's 2019 National Conference. Her lecture, along with 13 other presentations, was videotaped and is now posted on the Foundation's YouTube channel.

WATCH VIDEO

2019 Conference Awards Fundraiser Ciszon

(L-R): Cos Mallozzi, Chairman, Scleroderma Foundation, Katelyn Ciszon, Marty Ciszon, Zach Ciszon, and Jenna Kane, Fundraisers of the Year


The Ciszon Family:  Fundraisers of the Year

The 2019 Fundraiser of the Year award recognizes the Ciszon Family from Crystal Lake, Illinois.  For nine years, the family has raised more than $80,000 through a golf outing they created.  After seeing their mother struggle with scleroderma (she passed away from the disease in 2016), the Ciszons started a golf outing in 2011, called the “Tournament of Non-Champions.”  It is a fun day that is less about getting a good score and more about supporting an important cause.  Through perseverance and hard work, they have grown the event from 30 attendees and $1,000 to 150 attendees and $20,000. The family is a shining example of what can happen when people come together around a shared cause. Congratulations to the Ciszon Family!

AWARDS

Advocacy 2018 Capitol Hill Day Hannah Diane Weber

Scleroderma Advocates Hannah (left) and Diane Weber at Capitol Hill Day 2018.


They Work for You

Really!  Elected officials, no matter how lofty their position, are public servants.  Voting isn't the end of your responsibility as a citizen; you can also communicate with your Representative and Senators.  Right now, a letter from you can help move House Bill H.R. 3446 (The National Commission on Scleroderma and Fibrotic Diseases Act; introduced by Rep. Peter T. King, R-NY-2) through committee.  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.

Download and sign the advocacy letter to ask your U.S. Representative to cosponsor the bill.   Your letter will be hand-delivered to your Rep's office in Washington, D.C. Mail the signed letter to the Scleroderma Foundation, 300 Rosewood Drive, Suite 105, Danvers, MA 01923.

DOWNLOAD & SIGN ADVOCACY LETTER

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Scleroderma Education

Learn Local. Each chapter in the Scleroderma Foundation offers at least one scleroderma education program every year. There are nine from September through November in six different states.

CALENDAR

Michigan Parents Virtual Support October 2019


Medications and the Side Effects: Finding the Best Way to Help Your Child Cope

October 2, 2019, 7:30 p.m. - 9 p.m. Eastern
Kathryn Torok, M.D., Pediatric Scleroderma Clinic, Children’s Hospital of Pittsburgh

Do you wish you knew more about your child’s scleroderma medication?  Do you have questions about what a medication is or what it’s doing?  Join the October 2 Parents of Children with Scleroderma Virtual Support Group to learn helpful tips for finding the most accurate information about your child’s medication.  After registering, you will receive a confirmation email with information to join the meeting.

REGISTER TODAY

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New Scleroderma Research & Treatment Center in Denver, Colorado

The Scleroderma Program at National Jewish Health in Denver, Colorado, offers comprehensive care and support for individuals with scleroderma.  Their multidisciplinary scleroderma team includes specialists in rheumatology, interstitial lung disease, pulmonary hypertension, cardiology, gastroenterology, and nephrology. The center also offers the latest scleroderma clinical trials.

LEARN MORE

Healio Rheumatology


Patient-Reported Symptoms Linked to Disease Activity Changes in SSc

Patient-reported symptoms are associated with clinically impactful changes in systemic sclerosis disease activity, according to findings published in Arthritis Care & Research.

READ MORE

Pulmonary Fibrosis Awareness 30 Facts 03 09-11


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 and with hashtag #BlueUp4PF. 

READ MORE

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

Ticket to Work - WISE 2018


Putting it Together: Healthcare and the Path to Employment

Webinar: September 25, 3 p.m. - 4:30 p.m. Eastern

Curious about how working and earning income will affect your benefits? Join ChooseWork on September 25 at 3 p.m. ET for the next WISE webinar, Putting it Together: Healthcare and the Path to Employment.  The webinar addresses myths about receiving Medicare and Medicaid while working.   In addition to sharing facts on healthcare and the path to work, you’ll also learn about Social Security’s Ticket to Work program and the resources, supports, and work incentives that can help individuals succeed on the path to financial independence. Join the conversation and share the registration link today!

SIGN UP TODAY

Stepping Out Tri-State 2019 Boy


Be Part of the Cure
Join Stepping Out to Cure Scleroderma

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.

Sign up for a Stepping Out to Cure Scleroderma fundraising walk or 5K run near you.  Ask your family, friends, and coworkers to join your walk team and to help you raise money using effective online fundraising tools.

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. 14: Snohomish, Washington
Sept. 15Westfield, Massachusetts
Sept. 21Dixon, Illinois
Sept. 29Boston, Massachusetts
Oct.    5:  Kansas City, Missouri

ALL WALKS

 

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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