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Scleroderma Foundation
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eLetter #836 | October 25, 2019  

YouTube 2019 Harper Cannabis

JoAnna Harper, Pharm.D., R.Ph.


Cannabis Conundrum
2019 National Conference Video

JoAnna Harper, Pharm.D., R.Ph., Pain Partners, LLC, presented "Cannabis Conundrum: Weighing the Pros and Cons of THC, CBD, and Related Compounds in Scleroderma" at the Scleroderma Foundation's 2019 National Conference in Chicago, Illinois.  Her presentation, along with 13 others, was videotaped and is now posted on the Foundation's YouTube channel.

WATCH VIDEO

2019 Conference Award Education So Idaho

(L-R) Robert J. Riggs, CEO, Scleroderma Foundation, David Murad, Chapter Relations Director, and Dee Burlile, Southern Idaho Support Group Leader


Southern Idaho Support Group Recognized for Outstanding Education Program

The 2019 Outstanding Education Program award was presented to the Southern Idaho Support Group.  Dee Burlile, the group leader, accepted the award.  Although they were not part of a chapter until just recently, the group consistently provided outstanding patient education opportunities for individuals in their community. Last year, they hosted an all-day patient education program that included scleroderma experts. Despite being in a region without a nearby scleroderma center, they maximize community resources to promote awareness and to enhance opportunities for scleroderma education. And, the group secured proclamations from the Governor of Idaho for Scleroderma Awareness Day. Congratulations to the Southern Idaho Support Group!

AWARDS

Advocacy Capitol Hill 2018 Markoff


It's Easy to Advocate!

Don't go to D.C.Go to scleroderma.org/advocacy and sign, scan, and email the advocacy letters asking your U.S. Representative and Senators to co-sponsor H.R. 3446 and S. 2477.  The identical bills, titled National Commission on Scleroderma and Fibrotic Diseases Act of 2019, are bipartisan and budget-neutral, and are designed to improve coordination of research related to scleroderma and other fibrotic diseases already funded by the National Institutes of Health.

Email the signed letters to advocacy@scleroderma.org, or mail to: Scleroderma Foundation, ATTN: Advocacy, 300 Rosewood Drive, Suite 105, Danvers, MA 01923-1389.

READ MORE

Heartland Education 2019 Maheshwari

Ana Maheshwari, M.D.


Scleroderma Education Programs

Learn Local. Each chapter in the Scleroderma Foundation offers at least one scleroderma education program every year. There are three remaining in 2019 in three different states.

CALENDAR

Healio Rheumatology


Scleroderma Foundation Gives Voice to 'Overlooked' Disease

Foundation CEO Robert J. Riggs was interviewed by the online publication Healio Rheumatology for an article that appeared in today's, October 25, 2019, edition.  Riggs makes the case for the Foundation's role in foster scleroderma research and spurring the careers of scientific investigators through its peer-reviewed research program.  He also lauds the organization's outreach to individuals and families affected by scleroderma through its support and education programs, notably the annual National Patient Education Conference. Read the full article for Riggs' full commentary and the call for dramatically greater research funding.  

READ MORE

Common Raynaud Symptoms


Common Raynaud Symptoms

October is Raynaud Awareness Month

Visit the Raynaud's Association website to review a list of frequently asked questions about this disease that commonly occurs in association with scleroderma.  

FAQs

myPHteam Saying No


Say "No" by Saying "Yes" to Something Else

NO doesn't mean NEVER. It means not NOW.

Learn how compromise can empower you when you're living with pulmonary hypertension.

myPHteam

Halloween Pumpkin


Trick or Treat!

According to the History Channel, "Halloween originated with the ancient Celtic festival of Samhain, when people would light bonfires and wear costumes to ward off ghosts. In the eighth century, Pope Gregory III designated November 1 as a time to honor all saints; soon, All Saints Day incorporated some of the traditions of Samhain. The evening before was known as All Hallows Eve, and later Halloween. Over time, Halloween evolved into a day of activities like trick-or-treating, carving jack-o-lanterns, festive gatherings, donning costumes and eating sweet treats."

HAPPY HALLOWEEN!

Clinical Trial Opportunities

ClinicalTrials.gov

Clinical Trials mapYou can track clinical trials for scleroderma, systemic sclerosis, pulmonary hypertension, and more at ClinicalTrials.gov.  This robust website is published and maintained by the National Institutes of Health, U.S. National Library of Medicine.  Search options include trials that are recruiting, country, state, and more.  States highlighted in red in the map (left) have the most scleroderma-related trials.  This concentration in specific states is the solely the result of the geographic location of the institutions that focus on scleroderma research. 

You can also find information about scleroderma-related clinical trials on scleroderma.org/centers, where designated "Scleroderma Research and Treatment Centers" list the trials taking place in their institutions.   

CLINICAL TRIALS

 
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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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