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eLetter #780 | September 21, 2018  

YouTube Pain Management I 2018

 

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

At the 2018 National Patient Education Conference we filmed JoAnna Harper, Pharm.D., R.Ph., of Pain Partners, L.L.C., presenting Pain Management: How to Empower Yourself Without Reliance on Opioids, Part I. This session provided an insider's view of a pain management clinic and ideas to effectively treat your pain with fewer medications, and how to use your medications most appropriately.

watch this video & others from the 2018 conference

Individual Fundraiser of the Year 2018 Jerry Sandy Austin

Individual Fundraiser of the Year

The 2018 Individual Fundraiser of the Year Award recognized Jerry and Sandy Austin of Virginia for their tireless work to raise funds and awareness on behalf of the Scleroderma Foundation.  After a scleroderma diagnosis, they created a highly successful golf tournament fundraising event.  Over the past five years, their fundraising efforts have been extraordinary.  In addition, Jerry’s supervisor at Delphinus Engineering was recruited to become a high-profile corporate partner, which in turn engaged Delphinus staff to make magic happen at the annual golf tournament. Congratulations Jerry and Sandy!

scleroderma.org/conference

Dartmouth-Hitchcock Medical Center logo

 

Research & Treatment Centers

Dartmouth Hitchcock Medical Center

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 New Hampshire, go to the Dartmouth Hitchcock Medical Center in Dartmouth, N.H. 

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​

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

Join Inspire!
 

Join the Online Scleroderma Support Group

Are you searching for an online scleroderma support group?  Forget Facebook, join Inspire.com.  There are more than 40,000 individuals affected by scleroderma at Inspire.com.  The site is secure and your privacy is protected.  You're free to post sensitive questions and you'll receive encouraging responses from others who experience the same issues.  The site is monitored by staff from the Scleroderma Foundation and by Inspire staff to maintain a conducive environment.  

join the conversation at Inspire.com

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National Voter Registration Day

September 25

Are you registered to vote?  If your address has changed or if you haven't voted recently, your voter registration might not be active.  Several states have policies that require voters to maintain their voter registration. Regardless of your political affiliation, voting is not only a right it's an obligation.  As a public service, we’re happy to provide the link below where you can look up your state’s voter registration rules.  In some cases, you can confirm your voter registration online; others might require you to appear in person.  If you’re not registered, we encourage you to register today!

how to register to vote in your state

Pulmonary Fibrosis Awareness 2018 Facts

September is Pulmonary Fibrosis Awareness Month

Follow the Pulmonary Fibrosis Foundation on social media (@pfforg) to learn more about their initiatives. During September, they are posting 30 facts in 30 days about pulmonary fibrosis, in addition to other activities.

pulmonary fibrosis awareness

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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

Ticket to Work - WISE 2018

Ticket to Work

WEBINAR: September 26, 3-4:30 p.m. ET

Are you interested in working from home or starting your own business?  Register now for @Choose Work!’s September WISE webinar!  They’ll discuss how people eligible for the Ticket to Work program can receive supports and services to pursue these career goals and start working from home or open their own business!  

Sign up for the Choose Work WISE webinar

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 Illinois, Massachusetts, Texas, Pennsylvania, or Oklahoma.

9/22 - Dixon, IL  •  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 Faces Square

Reach for the Cure

As deeply as we believe in the promise of medical science, no one who has scleroderma can afford to wait.  That is why we started the Reach for the Cure capital campaign to fund the broad spectrum of scleroderma research opportunities and to accelerate the process. 

The need is great.  The time is now.  We sit on the threshold of the future.  Let’s launch a new era of scientific discovery and drug development to treat and to cure scleroderma.  Please join us by giving as generously as you can.

donate to reach for the cure

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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