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Scleroderma Foundation
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eLetter #824 | August 2, 2019  

FDA


FDA Advisory Committee Recommends Approval of Ofev® (nintedanib)

The Arthritis Advisory Panel of the U.S. Food & Drug Administration recommended by a 10-7 vote to approve Ofev® (nintedanib) for the treatment of systemic sclerosis-associated Interstitial Lung Disease (SSc-ILD).   ILD is the leading cause of early death in patients with systemic sclerosis (SSc).  If approved, the drug would be the first medicine approved in the U.S. for the treatment of these patients.  The news was announced in a July 25 press release issued by Boehringer Ingelheim, the pharmaceutical company that developed and has been testing the drug.

READ THE PRESS RELEASE

2019 Conference Award Doctor Farrell 180

(L-R): Jessica Farrell, Pharm.D., Doctor of the Year, and Robert J. Riggs, CEO Scleroderma Foundation


Farrell Honored with Prestigious Doctor of the Year Award

For her heroic work in securing off-label usage of the immunosuppressant drug CellCept® (mycophenolate mofetil) for treating scleroderma, Jessica Farrell, Pharm.D., a clinical pharmacist and associate professor at the Albany College of Pharmacy and Health Sciences, was honored with the Doctor of the Year award during the 2019 Awards Luncheon at the Scleroderma Foundation’s National Patient Education Conference in Chicago. Thanks to her efforts, mycophenolate mofetil is now listed in the Medicare drug database for off-label use in scleroderma, paving the way for its inclusion on the drug compendia for other insurance carriers. This is important because the drug has been shown in multiple studies to lower measures of skin thickening and to have a stabilizing effect on lung involvement in systemic sclerosis. Congratulations and thank you, Dr. Farrell!

CONFERENCE AWARDS

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. Eastern

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

Michigan Webinar 2019 August 7


Scleroderma Men

Webinar: August 8, 7:00 p.m. - 8:30 p.m. Eastern

About 20 percent of individuals affected by scleroderma are men.  Tune in to the August 8 webinar to learn more about scleroderma in men from Vivek Nagaraja. M.B.B.S., Michigan Medicine, Rheumatology, Assistant Professor.  

Register today.  When you sign up you'll receive a confirmation email with additional instructions to join the webinar on the day-of.  

REGISTER

Advocacy 2018 Capitol Hill Day Todd Gilligan

Todd Gilligan at Capitol Hill Day 2018


Call to Action on H.R. 3446

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

Sign the advocacy letter asking your member of Congress to cosponsor the bill, and mail it to the Scleroderma Foundation National Office, 300 Rosewood Drive, Suite 105, Danvers, MA  01923.  All advocacy letters are hand-delivered to each Representatives' office on Capitol Hill.  Make your voice heard!

DOWNLOAD THE LETTER TODAY

TOSS scleroderma self management


Taking Charge of Systemic Sclerosis

Often, persons with scleroderma do not know other people with the disease.  They might live in a state where there is no chapter of the Scleroderma Foundation, or their  community might not have a support group.  This web based self-management program was designed to help you learn about scleroderma, to manage your symptoms, and to learn strategies to help you advocate for yourself.

Knowledge and advocacy skills need to be continually woven, like a basket, into one's daily life. Register today to gain skills and confidence to manage systemic sclerosis (SSc) symptoms, and to develop strategies to advocate for yourself.  Peer Mentors from the program will empower you to take control of your life and your healthcare.

SELFMANAGESCLERODERMA.COM

2019 Stepping Out Oregon Couple

2019 Stepping Out Evergreen Jeremy


Where Do You Step 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.

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.  3:   Dayton OH
Aug.  4:   Aurora IL
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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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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