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eLetter #781 | September 28, 2018  

YouTube Pain Management II 2018

 

Conference Video: "Pain Management: How to Empower Yourself Without Opioids, Part II"

At the 2018 National Patient Education Conference we filmed Ginny Maril, Ph.D., California Lutheran University, presenting Pain Management: How to Empower Yourself Without Reliance on Opioids, Part II. This session focused on non-pharmacologic coping strategies for pain management. Attendees learned about various methods and practiced employing them during the session.

watch this video & others from the 2018 conference

2018 National Volunteer

National Volunteer of the Year

The 2018 National Volunteer of the Year Award recognized Dennis Fyke and Tonya Fyke of Texas, who have become an important part of the National Patient Education Conference family. This brother and sister team lost their mother to scleroderma in 2010. They first volunteered in honor of thier in 2012 at the National Conference in Texas. Philadelphia was their sixth conference. Dennis and Tonya anticipate needs and address them, and they cover a wide variety of roles to make conference run efficiently. They also volunteered for a “Patients as Partners” event in Dallas. Never seeking reward, their only request is for more opportunities to help. Congratulations Dennis and Tonya!

scleroderma.org/conference

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PHA on the Road

September 29, Long Beach, California

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 Long Beach, California, Saturday, September 29, to make connections with families living with PH and to provide education, support, and networking opportunities – all free of charge. 

Long Beach, Calif., Sept. 29

2018 October Michigan Webinar
 

Webinar: "What in the World is New with Scleroderma?"

October 18, 2018; 7 - 8 p.m. Eastern

The scleroderma world is constantly evolving.  Are you curious about the latest happenings?  Join this webinar for a presentation by Daniel Furst, M.D., rheumatologist, and facilitator Nancy Stephens.  Open to individuals with scleroderma, caregivers, and family members.  

register for the webinar

2018_KGS2_logo_WEB
 

Kids Get Scleroderma Too

October 26 & 27, Aurora, Colorado

The Rocky Mountain and Tri-State Chapters are excited to co-host “Kids Get Scleroderma Too” on October 26 and 27, 2018, at Children’s Hospital Colorado in Aurora, Colorado. This event is for youth and teens who have scleroderma, and their parents and siblings. Juvenile scleroderma experts from around the country will lead educational sessions and group discussions.  Friday night features a fun Halloween costume party for the whole family!  Scholarships are available.

register today: 2018KGS2.sclerodermatristate.org​

NCCIH Clinical Digest Yoga for Pain


Yoga for Pain

Yoga may help relieve low-back pain and neck pain, but it has not been shown to be helpful for some other painful conditions such as headache, arthritis, fibromyalgia, or carpal tunnel syndrome.most of the adults surveyed who practice yoga reported doing so for wellness-related reasons, many said they practiced yoga to treat a specific health condition, including pain. The September 2018 NCCIH* Clinical Digest provides a summary of available research on yoga for pain, including fibromyalgia, low-back pain, headaches, neck pain, and arthritis.

*National Center for Complementary and Integrative Health 

read more

Dermatology Advisor Logo


Importance of Screening Skin Pigmentation Disorders in Systemic Sclerosis

Screenings for skin pigmentation disorders in patients with systemic sclerosis (SSc) may be useful in identifying digital ulcer risks, according to a study published in the Journal of the American Academy of Dermatology.

read more

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Don’t Turn a Cold Shoulder to Painful Fingers

October is Raynaud's Awareness Month and the Raynaud’s Association is launching a new awareness campaign, called Don’t Turn a Cold Shoulder to Painful Fingers, to urge those with the painful disorder – and their doctors – not to dismiss the pain individuals who have Raynaud’s endure.

read more

myPHteam logo
 

Patience: Accepting That Control Requires Self-Care

Patience can feel scarce when you don't have control over a situation. It can feel like pulmonary hypertension interrupted your life and brought a slew of frustrations at the worst moments.

Find control and hear how others practice patience on myPHteam

Hackensack Meridian Health Joseph M Sanzari Children's Hospi


Research & Treatment Centers

Division of Pediatric Rheumatology,
Joseph M. Sanzari Children’s Hospital

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 area of Hackensack, New Jersey, go to the Division of Pediatric Rheumatology, Joseph M. Sanzari Children’s Hospital

Stepping Out Logo 2018 Be Part of the Cure
 

Step Out to Cure Scleroderma in September & October

Rally your family and friends for a brisk fall walk to raise money to help people with scleroderma through support, education, and research.  Attend a Stepping Out to Cure Scleroderma walk or 5K run in Massachusetts, Texas, Pennsylvania, or Oklahoma.

9/30 - Boston, MA • 10/6 - Dallas, TX
10/7 - Philadelphia, PA • 10/13 - Broken Arrow, OK

sign up to walk today!

Reach for the Cure The Bittmanns

Reach for the Cure

Bruce and Karen Bittmann made a significant contribution in appreciated securities to the Reach for the Cure fundraising campaign. “We’re proud to contribute what we can and hope we can motivate other people to do the same thing.”

“I wish I could have known my Mom," said Bruce. "I lost her as a five-year-old. Through this gift and others, we can honor and remember her, as well as help prevent other little five-year-olds from losing a mom.”

The Scleroderma Foundation started Reach for the Cure to more fully fund the broad spectrum of research opportunities to discover the cause, understand the mechanism, and overcome scleroderma. The need is great.  The time is now.  Please join us by giving as generously as you can.

donate to reach for the cure

Voice Fall 2018 Cover

Winter Voice Published Online Only

Subscribers to Scleroderma Voice should note that the winter edition 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 will receive an email with a link to read the magazine online.

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

reata_horizontal_logo-2018-Bronze Natl


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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