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eLetter #825 | August 9, 2019  

Healthcare Ready


Rx Open: Disaster Preparedness Tool

When a natural disaster strikes, such as a hurricane, tornado, or earthquake, pharmacies can be damaged and forced to close. Rx Open, provided by Healthcare Ready, is a free online map that shows open pharmacies in affected areas. Healthcare Ready is a non-profit supported by both public and private sector partners that works to ensure patient access to healthcare, including medicines, during times of disaster.

RX OPEN

2019 Conference Award Chapter Ohio 180

(L-R): Cos Mallozzi, National Chairman, Tina Fellows, Executive Director, Ohio Chapter


Ohio:  Chapter of the Year

The Ohio Chapter was recognized as the Chapter of the Year for its overall excellence in advancing the mission of the Scleroderma Foundation. The chapter's efforts exceeded expectations in support, education, and research. Support for patients, families, and caregivers extends throughout the state—via in-person and virtual events. The chapter hosts a bi-annual, statewide education event that features many scleroderma experts who also present at the National Conference. The chapter utilizes social media in a variety of ways—from sharing information about events to promoting newsworthy scleroderma-related stories. They review social media analytics to learn more about who engages with the Ohio Chapter online and how effective their posts are. In addition to their outstanding awareness and advocacy efforts, the Ohio Chapter embraced the Reach for the Cure campaign to raise additional funds for research. Congratulations to the Ohio Chapter.

CONFERENCE AWARDS

Ticket to Work - WISE 2018


Putting It Together: Ticket to Work’s Resume and Interview Tips

Wednesday, August 28, 3 4:30 p.m. ET

Do you have questions about writing your resume or preparing for a job interview, and addressing gaps in employment? Join Choose Work for the next WISE webinar, “Putting it Together: Ticket to Work’s Resume and Interview Tips.”  The webinar also covers how to discuss disability with an employer and how Social Security’s Ticket to Work program can help job seekers succeed on the path to financial independence. Join the conversation and share the registration link today!

REGISTER

Advocacy 2018 Capitol Hill Day Steinwandt

Karen Steinwandt,Capitol Hill Day 2018


Call to Action on H.R. 3446

H.R. 3446, the National Commission on Scleroderma and Fibrotic Diseases Act, introduced in the U.S. House of Representatives by Rep. Peter T. King (R-NY-2), is a bipartisan, budget-neutral bill that would establish a commission to improve coordination of NIH-supported research related to scleroderma and other fibrotic diseases.  

Please make your voice heardDownload and sign the advocacy letter asking your U.S. Representative to cosponsor the bill.  Mail the signed letter to the Scleroderma Foundation National Office, 300 Rosewood Drive, Suite 105, Danvers, MA  01923.  Advocacy letters will be hand-delivered to each Representatives' office on Capitol Hill.

DOWNLOAD & SIGN ADVOCACY LETTER

 

Seaman Family Walk 72

Jill Seaman (2nd from left) and family at Stepping Out to Cure Scleroderma Denver


Inspiring Others

When Jill Seaman's lung involvement worsened, her doctor introduced her to the Scleroderma Foundation Rocky Mountain Chapter. Each event was a new opportunity for Jill to connect with others affected by scleroderma.  Now, Jill and her family are an incredible source of inspiration to others. When they are not raising money and awareness at the local Stepping Out walk, they are representing the Foundation as advocates for more research with Colorado state legislators and in Washington, D.C. 

“I don’t want to miss out on life, so I take things day by day. When I feel bad, I rest. When I feel good, I live!” Jill says.

Please give a gift today to support the work and mission of the Scleroderma Foundation. Read more about Jill and how your gift is helping her and her family to make the most of the good days.

 

2019 Stepping Out TriState B


Who Is Your Stepping Out Hero?

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.

Below are links to upcoming walks.  Online registration typically closes a day or two before the walk date, but you may register on-site on the day of the walk.

Aug. 10:  Cleveland OH, York PA
Aug. 17:  San Diego CA
Aug. 18:  Germantown WI
Sept. 7:   Springfield IL
Sept. 8:   North Shore MA, Philadelphia PA
Sept. 14: Snohomish WA
Sept. 15Westfield MA
Sept. 21Dixon IL
Sept. 29Boston MA
Oct.    5:  Kansas City MO

FIND MORE WALKS

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Research Grant Deadline: September 16

The Scleroderma Foundation's peer-reviewed grant program offers two distinct funding opportunities, the New Investigator Grant and the Established Investigator Grant, which are designed to foster the development of innovative and high quality scleroderma research.

The Foundation's research funding choices are based on scientific merit and are made by a peer-review panel that follows the method used by the National Institutes of Health.  The Foundation seeks to discover the cause of the disease, to understand the mechanism of how the disease operates in the body, and to develop therapies to overcome scleroderma forever.  

APPLY OR LEARN MORE (800) 722-4673

 
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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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