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Scleroderma Foundation
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eLetter #811 | April 26, 2019  

voice cover 2019 spring


New Scleroderma Research Grants

The spring issue of Scleroderma Voice will formally announce seven new research grants awarded by the Scleroderma Foundation Peer-Review Grant Program. Read the summaries of each research project by becoming a Foundation Member and subscribing to the Voice, www.scleroderma.org/membership.

Research to discover the cause, to understand the mechanism, and to overcome the disease creates hope for hundreds of thousands of individuals affected by scleroderma.  Of the seven awards, three are New Investigator Grants, which are three-year grants in the amount of $150,000 given to scientists starting their careers in scleroderma research. The other four are Established Investigator Grants, which are also $150,000 but over the course of two years.

support_groups


Who is a Support Group Leader?

Scleroderma support groups are led by volunteers, who receive support and resources from the Scleroderma Foundation.  These leaders, who typically have scleroderma, give their time to enable other individuals with scleroderma to meet and exchange information with each other. Groups host expert speakers from time to time. There are some 160 Scleroderma Foundation-affiliated support groups around the country, but it's a big country.  If there isn't a group within driving distance of you, perhaps you'd be interested in starting one?  

To discuss starting a scleroderma support group, send an email to SFinfo@scleroderma.org, or call (800) 722-4673.

2019 National Conference Chicago Design 3


The Sky's the Limit in Chicago
July 19-20-21, Chicago, Illinois

The National Patient Education Conference is in Chicago, Illinois this year, where the sky is the limit.  Get access to world renowned scleroderma experts, reunite with old friends, and connect with others who have scleroderma. 

Watch this brief video to get a glimpse of what conference is all about.  

Register today to take advantage of the early bird discount before it ends May 22. 

KGS2 Kids Get Scleroderma Too logo SF


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

Michigan Webinar 2019 May


Microbiome, and How it Affects Your Disease

  • Webinar, Thursday, May 9, 2019
  • 7 - 8:30 p.m. ET

What is the microbiome and how does it affect scleroderma?  Register for the Michigan Chapter's May webinar to learn about the topic from Narayanan Parameswaran, B.V.Sc., Ph.D., professor of Biomedical Physical Sciences at Michigan State University. When you register, you'll receive a confirmation email with additional instructions to join the webinar on the day of.

register today

Travel with a Rheumatic Disease HSS The Playbook


Tips for Traveling with a Rheumatic Disease

Read an article that provides tips for traveling for individuals who have a rheumatic disease in the "The Playbook," the official blog for the Hospital for Special Surgery (HSS).  Located in New York City, HSS hosts a Scleroderma Research and Treatment Center affiliated with the Scleroderma Foundation.

read the article

PAR 2019 Meet The Experts


Meet the Experts: Taking Charge of Your Lung Health

American Thoracic Society, Public Advisory Roundtable 
13th Annual FREE Patient/Family Forum
Saturday, May 18, 2019, 10 a.m. - 2 p.m.
Hyatt Regency Hotel, Dallas, Texas

With Anne-Marie Russell, Ph.D., MSc.N., Daniel Croft, M.D., M.P.H., Narelle Cox, Ph.D., Kathleen Lindell, Ph.D., and Kelly Chin, M.D.

Welcome message delivered by Kerri Connolly, Chair of the ATS PAR and Scleroderma Foundation Director of Programs & Services.

Please RSVP by email to cwhite@thoracic.org no later than Wednesday, May 8, 2019. For more information, please contact Mr. Courtney L. White, (212) 315-8640.

read more

Liz Kappes Hope Raiser


Raising Hope by Running

Liz Kappes is raising hope for her mom, who was diagnosed with scleroderma in 2007.  Liz is running the San Francisco Marathon on July 28, 2019. A marathon is an exhausting challenge, but it pales in comparison to living with scleroderma. Liz set up a Hope Raiser page on the Foundation's website and is using her run to motivate others to donate to research to discover the cause, understand the mechanism, and overcome scleroderma forever: www.scleroderma.org/goto/raisinghopekappes.

You can be a Hope Raiser, too!  Create a fundraising page for your event at www.scleroderma.org/hoperaisers.

Jennifer Cropper Direct Mail 2019 I


Because You Give, They Have Tools to Thrive

When Jennifer Cropper was told she had scleroderma, her first reaction was denial. Accepting her diagnosis would take time. “That was a scary time for me. I wouldn’t even look into scleroderma. I just felt at a loss. Eventually, I pulled my head out of the sand and started learning about my diagnosis.”

Jennifer found the Scleroderma Foundation’s website and decided it was time to face this disease that was changing her body in ways she did not understand.

Because you give, they have the tools.
Please give a gift today to support the work and mission of the Scleroderma Foundation.

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.

April 27:  Houston, TX
April 28:  Worcester, MA
May 04:  Ventnor, NJ
May 18:  Columbia, MDWestbrook, ME
May 19:  Sherman Oaks, CA

Find more walks at scleroderma.org/steppingout

 
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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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