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Scleroderma Foundation
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University of Cincinnati Medical Center  – CTD-ILD and Scleroderma Clinic

eLetter #784 | October 19, 2018  

YouTube 2018 Hummers Cancer

 

"Understanding the Link Between Scleroderma and Cancer"

At the 2018 National Patient Education Conference Laura Hummers, M.D., Johns Hopkins University, gave a presentation on cancer and scleroderma.  Dr. Hummers discussed possible reasons why studies have suggested that the risk of cancer might be increased in people with scleroderma. She also explored more recent data suggesting that cancer is the source of the autoimmune response in scleroderma. Implications for treatment and screening for cancer were also discussed.

watch this video & others from the 2018 conference

2018 Outstanding Patient Support

[L-R] Chairman Cos Mallozzi with Andrew Botieri, Mary Beth Bobik Kadylak (Tri-State Chapter),
and Lee Korotzer


Outstanding Patient Support Award

The 2018 Outstanding Patient Support Award went to Andrew Botieri and Lee Korotzer, who have devoted tremendous effort to provide emotional support to men affected by scleroderma.  The needs of men with this disease can be under-appreciated and sometimes overlooked, because women are thought of as the primary disease population.  Andrew and Lee took charge of a support ggroup on Facebook, called ScleroMen, and made it work.  Now, men who have scleroderma can connect with each other in a safe and supportive environment to share their deepest thoughts and feelings about the impact of the disease on them personally.  Congratulations Andrew and Lee!

ScleroMen Support Group

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PHA on the Road

October 27, Milwaukee, Wisconsin

PHA on the Road is a free education and networking event for individuals with pulmonary hypertension (PH) and their families.  PHA will be “on the road” in Milwaukee, Wisconsin, Saturday, October 27, to make connections with families living with PH and to provide education, support, and networking opportunities – all free of charge. 

Milwaukee, Wisconsin, October 27

myPHteam logo
 

myPHteam

Most people mean well, but we don't need them to try and fix us. If you are living with scleroderma and pulmonary hypertension you are not alone!

Connect with others who truly UNDERSTAND what life with #PH is like on myPHteam

UC Health University of Cincinnati


Research & Treatment Centers

University of Cincinnati Medical Center
 – CTD-ILD and Scleroderma Clinic

The Scleroderma Foundation has formal affiliations with nearly 50 scleroderma research and treatment centers in the U.S. To be designated as a center, a clinic must:

  • Demonstrate expertise in the care of patients with scleroderma.
  • Conduct scleroderma research (clinical and/or observational and/or laboratory-based).
  • Conduct educational activities about scleroderma, and provide information about the advances in the care and treatment of patients with scleroderma to health care professionals and the public.

In the Cincinnati, Ohio area go to the University of Cincinnati Medical Center  – CTD-ILD and Scleroderma Clinic.

Hope Raisers II
 

Online Fundraising Tool

Forget Go Fund Me, we have an online fundraising tool you can use for just about anything you do to raise money to fight scleroderma.  Hope Raiser allows you to fundraise if you're running a marathon, hosting a benefit, creating a memorial fund, or...you name it!  Create a Hope Raiser account, post a photo, tell your story, and invite folks to donate or participate in your event.

learn more: www.scleroderma.org/hoperaisers

Safete Kacaj Luljeta Dervisevic Sisters Reach for the Cure

Reach for the Cure

At age 13, Safete Kacaj was diagnosed with systemic sclerosis. After 21 years, her battle ended June 2018. Luli, her sister, raised $25,000 in Safete’s memory to fund research for a cure and to remove the stigma that forced Fete (Safete’s nickname) to hide her symptoms.

“The last time I heard my sister’s voice was July 7 of last year. She was chosen to carry this disease. She was the strongest person on the planet.”
Luljeta Dervisevic, sister of Safete Kacaj (1984-2018)

Join Luli with a generous donation to “Reach for the Cure,” and help discover the cause, understand the mechanism, and overcome scleroderma.

donate today

watch the reach for the cure video

Voice Fall 2018 Cover

Winter Voice Published Online Only

If you are a subscriber to Scleroderma Voice, you should note that the winter edition (November) will be published online only.  By publishing one issue online, the Foundation reduces production costs and can use that savings toward other parts of our mission. 

Subscribers (Foundation members) will receive an email with a link to read the magazine online.

If you are a paid subscriber, please provide your current email address to ensure that you receive access to the winter Voice.

Contact webmaster@scleroderma.org,
or call (800) 722-4673.

CLINICAL TRIAL PARTICIPATION

Scleroderma Lung Study III
 

Scleroderma Lung Study III

Combining the Anti-Fibrotic Effects of Pirfenidone (PFD) with Mycophenolate (MMF) for Treating Scleroderma-Related Interstitial Lung Disease

Scleroderma Lung Study III (SLS III) is focused on the treatment of pulmonary fibrosis and is being conducted at 17 different centers throughout United States.  To participate, patients must meet the following criteria:

  • Be at least 18 years old
  • Have systemic scleroderma such as limited (previously called CREST syndrome) or diffuse scleroderma
  • Disease duration within 7 years from first symptom (other than Raynaud’s phenomenon), such as puffy fingers or skin thickening
  • Have shortness of breath
  • Documented lung or pulmonary fibrosis
  • Not have other serious illnesses
  • Meet other eligibility criteria that you study doctor will explain to you as part of the evaluation process.  

read more on ClinicalTrials.gov

 
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Actelion JSN 2018


Boehringer Ingelheim 2018 Platinum National Sponsor


Bayer 2018

2018 Gilead

 

United Therapeutics 2018 Bronze Conference Sponsor

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Arena Pharmaceuticals 2018 Corp Conf Sponsor

 

Corbus 2018 Corp Conf Sponsor

 

Genentech 2018 Corp Conf Sponsor

 

   

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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