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Scleroderma Foundation
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eLetter #823 | July 26, 2019  

SF Logo National Conference Tag


See You in Seattle!

The 2019 National Patient Education Conference in Chicago was a great success.  Another new record of approximately 700 registrations. 

If you weren't able to attend, put July 17-19, 2020, on your calendar and we'll see you in Seattle!  

Details will be posted on the conference website in January of 2020.  Sign up for e-Alerts to be notified when registration and scholarship applications are live.

CONFERENCE E-ALERTS

2019 Conf Award Lifetime Cogan

(L-R): Cos Mallozzi, Chairman,
Leslie & Jules Cogan,
Lifetime Achievement Honorees


Cogan Family Honored with Lifetime Achievement Award

The 2019 Lifetime Achievement Award was presented to the Cogan Family in recognition of their work in establishing a predecessor organization to the Scleroderma Foundation, and for their ongoing support of the mission. Leslie and Jules Cogan confronted Leslie's diagnosis by taking action. Based in Chicago, they connected with others coping with scleroderma in New York and Boston. Their efforts contributed to the formation of the Scleroderma Federation, which merged with the United Scleroderma Foundation in 1998 to form the Scleroderma Foundation of today.

CONFERENCE

Advocacy 2018 Capitol Hill Day Hannah Diane Weber

(L-R): Hannah and Diane Weber at Capitol Hill Day 2018


Call to Action on H.R. 3446

Representative Peter T. King (R-NY-2) introduced H.R. 3446, the National Commission on Scleroderma and Fibrotic Diseases Act. If passed into law, this bipartisan, budget-neutral bill would establish a commission to improve coordination of NIH-support research related to scleroderma and other fibrotic diseases.

Sign and return the advocacy letter asking your member of Congress to cosponsor the bill.  All advocacy letters are hand-delivered to each Congress member's office on Capitol Hill.  Make your voice heard!

DOWNLOAD THE LETTER TODAY

Michigan August Support Group


Cooking with Creativity for the Scleroderma Child

Parents of Children with Scleroderma Virtual Support Group; August 7, 7:30 p.m. - 9:00 p.m.

Learn how to have more fun with your family and your food. Tune into the August 7 virtual support group to learn helpful tips and recipes that will meet the dietary needs of your child with scleroderma and will "wow" the whole family.

REGISTER

My PH Team graphic


myPHteam

Pulmonary Hypertension occurs in roughly 20 percent of scleroderma patients. Connect with others who are living with PH and who really understand what you’re feeling beneath the surface with myPHteam.

Jill Seaman Direct Mail 2019 Congress

(L-R): Cyndy Besselievre, Board of Directors, Anna Seaman, Rep. Scott Tipton (R-3rd Colorado), Jill Seaman (Dx 2009)


Finding a Cure Comes from Funding Innovative Research

Jill Seaman (diagnosed 2009) and her family work with the Scleroderma Foundation to advocate for scleroderma research. Last year, Jill and her daughter, Anna, met with Colorado legislators to promote passage of bills related to scleroderma. She also took her story to the U.S. Capitol, meeting with Congressional leaders to gain support to find a cure.

“The more we can get the word out and we can get the right people to listen, we can find a cure faster. I know because of the Scleroderma Foundation’s diligence and all the wonderful people in the scleroderma community, we can help make that dream a reality one day!” Jill Seaman

GIVE TODAY to the Scleroderma Foundation mission.

Stepping Out Ohip child


Who Are You Stepping Out For?

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.  If online registration is closed, please sign up in-person at the walk site on the day of the event.

July 27:  Columbus OH
July 28:  St. Paul MN
Aug.  3:  Dayton OH
Aug.  4:  Aurora IL
Aug. 10Cleveland OH, York PA
Aug. 17San Diego CA
Aug. 18Germantown WI

FIND MORE WALKS

Research Participation Opportunity

Cumberland Pharmaceutical Heart
If you are an adult with Systemic Sclerosis, 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 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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