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eLetter #816 | May 31, 2019  

2019 Awareness Know the Face of Scleroderma Amy G


Know the Face of Scleroderma

June is Scleroderma Awareness Month

"Know the Face of Scleroderma" is the theme, which is an invitation to meet a group of individuals who have scleroderma and to hear their stories.  Throughout the month the Scleroderma Foundation, Scleroderma Canada, and Scleroderma Research Foundation will post on Facebook and Twitter with messages from people who have scleroderma about the impact of the disease on their life and how they carry on to achieve meaningful things in their lives. 

You can help increase awareness and understanding of scleroderma. Go to SclerodermaAware.org and download the toolkit of ready-made posts then share them on your social media networks.

Visit SclerodermaAware.org

Red Blood Cells


Foundation Funded Research Yields Potential Biomarker for Early Pulmonary Hypertension in SSc

Lesley Ann Saketkoo, M.D., M.P.H., and Matthew Lammi, M.D., M.S.C.R., co-directors of the University Medical Center, Comprehensive Pulmonary Hypertension Center; New Orleans Scleroderma and Sarcoidosis Patient Care and Research Center, offered comment on a recent article appearing in Rheumatology Advisor regarding using red blood cells as a biomarker for early pulmonary hypertension in systemic sclerosis.  The research was funded by the Scleroderma Foundation.

"This study seems to suggest there is warning signal from the body reflected in a higher RDW. The study results suggest that RDW is higher in patients with SSc and definite PH than those that don't have PH. In the patients with SSc-PH, RDW did not correlate with the severity of PH, only whether a person had PH or was at risk for PH."

"In order to further validate the utility of RDW as a predictor of SSc-PH, this study needs to be replicated in a larger and more diverse group of SSc patients who are followed over several years.

"In addition to being funded by a grant from the Scleroderma Foundation, an interesting dynamic of this research is that the first author, Dr. Petrauskas, was a medical student at the time of this work, underscoring the importance of SSc centers to cultivate trainees to care about SSc patients and research. The rest of the team reflects the inter-disciplinary nature of our SSc center with cardiologists, pulmonologists, and rheumatologists."

Read the article on "RheumatologyAdvisor.com."

Maureen Mayes M.D.


The Promise of Scleroderma Research

"The promise of my research, and that of my colleagues, is to find better therapies for scleroderma based on identifying the key pathways that are involved in causing this disease...  It will take a dedicated group of researchers to fulfill this promise."

Maureen Mayes, M.D., M.P.H., University of Texas

A generous donation to the Scleroderma Foundation's Reach for the Cure campaign funds innovative research to discover the cause, to understand the mechanism, and to overcome scleroderma forever.

The need is great. The time is now. The choice is yours.
Donate today

Betsy Craig UNSTOPPABLE


UNSTOPPABLE:
When Strong is All There Is
Closing Keynote Address
National Patient Education Conference
July 19-20-21, Chicago, Illinois

After falling ill from scleroderma in the early to mid-2000s, Betsy Craig had to find a strength she did not know was there.  Being UNSTOPPABLE was her only option, and in the end, she credits her success with business, disease, and life with that exact trait, being UNSTOPPABLE.  In 2018, she released her first book, UNSTOPPABLE:  A Recipe for Success in Life and Business.

Betsy Craig is a public speaker and author, and is Founder of MenuTrinfo, LLC.  

REGISTER TODAY for the National Conference

DC Capitol Dome Cherry Blossoms portrait


Capitol Hill Day 2019

Apply by June 10 to attend Capitol Hill Day
Washington, D.C., September 16-18, 2019

The Scleroderma Foundation’s Advocacy program provides you with the opportunity to meet policy makers on Capitol Hill to educate them and to generate awareness about scleroderma-related issues that are important for continued scientific research.  Of critical importance in 2019 is our drive to have scleroderma re-listed as an approved condition eligible for research funding through the Department of Defense’s Peer-Reviewed Medical Research Program.

Apply today to attend Capitol Hill Day and represent the scleroderma community.  Priority is given to those applicants who reside in Congressional districts whose Representative serves on the relevant committees to our legislative priorities. 

Scholarships are available to offset costs for travel and accommodations.  Apply by June 10. 

Learn more and download application

NeedyMeds


All You Need to Know About Scleroderma Lung Involvement

Webinar: June 18, 2019; 11:30 a.m. - 12:30 p.m. ET

Don't miss out as Scleroderma Foundation Medical and Scientific Advisory Board Member Aryeh Fischer, M.D., an Associate Professor at the University of Colorado School of Medicine, shares up-to-date and crucial information about this chronic condition affecting 300,000 Americans. This webinar covers need-to-know facts about scleroderma lung involvement, resources available to manage this diagnosis and the resources available from the Scleroderma Foundation that can help you on your journey towards health.

register today

KGS2 Kids Get Scleroderma Too logo Conf 2019


Kids Get Scleroderma, Too!
Kids, Teens, & Parents Program at National Conference

Kids Get Scleroderma Too (KGS2) is offered as part of the Scleroderma Foundation's National Patient Education Conference, which takes place July 19-20-21, 2019 in Chicago, Illinois. KGS2 is an exceptional program for children and teens, ages 5 to 17, who have scleroderma, and for their siblings, or children with a parent who has scleroderma, and for other young people whose lives are impacted by the disease.

KGS2 is designed to help children and teens and their caregivers learn more about scleroderma in a fun environment that promotes making new connections. The entire weekend is filled with engaging, fun workshops and activities specific to their needs.

learn more

Stepping Out Logo 2018 Be Part of the Cure - Web


Where are You Stepping Out?

Stepping Out to Cure Scleroderma is a fundraising event that brings together family and friends of those who have scleroderma. The monies raised by individuals and teams are used to advance the Scleroderma Foundation's three-fold mission of support, education, and research.

June: Virtual Plymouth MA

June 01: Boardman OH, Rochester NY, San Antonio TX

June 02: Albany NY, Binghamton NY, Detroit MI, La Mirada CA, Omaha NE

June 08: Columbia SC, Farmingdale NJ, Fort Collins CO, Lilburn GA, Nashville TN, Ridgefield Park NJ, Spokane WA, Toledo OH

June 09: Madison WI, Manhattan NY

June 15: Denver CO

June 22: Cincinnati OH, Highland IN, Poughkeepsie NY

June 23: Des Moines IA, Highland Park IL, Long Island NY, Westchester NY

June 29: Dallas TX, Hartford CT, Portland OR

Find more walks at scleroderma.org/steppingout

support_groups


1st Meeting Tampa Support Group

If you live in the Tampa area of Florida, there's a new support group that's holding its very first meeting, Saturday, June 1. The group meets from 10 a.m. to 12 Noon on the first Saturday of every month at the New Generation Faith Ministries, 8214 Paterson Road in Odessa, Florida.

Group Leader: Arlene Sweeney Cornwall,
(813) 442-6133, nurse2die4@hotmail.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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