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Scleroderma Foundation
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eLetter #827 | August 23, 2019  

2019 Conference Video Steen Lung


The Lung in Scleroderma

Virginia Steen, M.D., Georgetown University, was the featured presenter for the systemic sclerosis lecture at the Scleroderma Foundation's 2019 National Conference.  Her lecture on "The Lung in Scleroderma" was videotaped, along with 13 other presentations, and is now posted on the Foundation's YouTube channel.

WATCH VIDEO

2019 Conference Award Messenger Loccke

(L-R): Robert Riggs, CEO, with 2019 Messengers of Hope Caludette Johnson and Christina Loccke


Messengers of Hope

This year, two awards were presented in the Messenger of Hope cateogry.  One award went to Claudette Johnson and her mother, Christina Loccke, champions for pediatric scleroderma-related research and awareness.  They’ve taken their story to Capitol Hill.  They are active members of the Tri-State Chapter and the growing Kids Get Scleroderma, Too! program.  Their video, "In the Land of Rare Disease," won second prize in a national competition sponsored by the National Institutes of Health in celebration of Rare Disease Day.  By sharing her story publicly, Claudette reminds us that half those with rare diseases are children, who deserve a chance to get better. Congratulations Claudette and Christina!

AWARDS

Advocacy Capitol Hill 2018 Gietzen

Amy Gietzen,
Capitol Hill Day 2018


Speak Up for Scleroderma 

The National Commission on Scleroderma and Fibrotic Diseases Act, H.R. 3446, 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.  

You can help move the bill through committee by downloading and signing the advocacy letter asking your U.S. Representative to cosponsor the bill.  Mail the signed letter to the Scleroderma Foundation, 300 Rosewood Drive, Suite 105, Danvers, MA  01923.  Advocacy letters will be hand-delivered to each Representatives' office on Capitol Hill.

ADVOCACY LETTER

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

myPHteam overview landscape


myPHteam 

PH is high blood pressure in the arteries that carry blood from the right side of the heart to the lungs.  It's considered a lung disease, while hypertension is considered a cardiovascular disease.  Read more about the history and prevalence.

myPHteam

2019 Pulmonary Fibrosis Awareness Month


September is Pulmonary Fibrosis Awareness Month

During the month of September, the Scleroderma Foundation will partner with the Pulmonary Fibrosis Foundation to share 30 facts and 30 stories about pulmonary fibrosis on social media. 

You can join the campaign by following @pfforg on Facebook and Twitter using hashtag #BlueUp4PF. 

LEARN MORE

2018 Stepping Out Des Moines


Step Out and Be Part of the Cure

When you walk you make a difference in the lives of whole families impacted by this life-threatening disease.  Only by raising money can we provide emotional support and disease education to address the needs of individuals with scleroderma today, while fostering research to discover the cause, understand the mechanism, and overcome the disease forever.

Find a Stepping Out to Cure Scleroderma fundraising event near you. Ask your family, friends, and coworkers to join your walk team and to help you raise money.

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.

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

ALL WALKS

Discover Understand Overcome square


Research Grant Deadline: September 16

If you are involved in scleroderma research or research that involves fibrotic diseases, the Scleroderma Foundation offers two distinct awards: the New Investigator Grant and the Established Investigator Grant.

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. 

Grant applications must be received by 5 p.m. Eastern Time, Monday, September 16, 2019, in the Scleroderma Foundation's National Office. Postmarks do not satisfy the requirement.

APPLY OR LEARN MORE (800) 722-4673

 Clinical Trial Opportunity

Research Participation

Cumberland Pharmaceutical HeartIf you are an adult with Systemic Sclerosis (SSc), you may be eligible to take part in a research study sponsored by Cumberland Pharmaceuticals aimed at evaluating an oral study drug called ifetroban to determine if symptoms improve.

To learn more about ifetroban for Systemic Sclerosis, please call (615) 627-4121 or email bkaelin@cumberlandpharma.com. Eligible subjects will be reimbursed for their time and travel.

 

 
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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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