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eLetter #774 | August 10, 2018  
Saketkoo Lesley Doctor of the Year 2018

Doctor of the Year: 
Lesley Ann Saketkoo, M.D., M.P.H.

The highly recognized Doctor of the Year award for 2018 was presented to Lesley Ann Saketkoo, M.D., M.P.H., of Tulane University School of Medicine during the Scleroderma Foundation's 20th National Patient Education Conference in Philadelphia, July 28.

Dr. Saketkoo is an internationally recognized researcher, educator, and clinician in scleroderma/systemic sclerosis, sarcoidosis, myositis, pulmonary hypertension and intestinal lung disease (ILD).  She was principal investigator of the large study that identified the minimal set of outcome measures for connective tissue disease-related ILD and also for Idiopathic Pulmonary Fibrosis for use in clinical trial; and is the regional principal investigator for the PHAROS study and the NIH-sponsored Genome Research in African American Scleroderma Patients study.  

scleroderma.org/conference

Northwestern Medicine Feinberg School of Medicine

Northwestern University Scleroderma Center

 

Research & Treatment Centers

Northwestern Scleroderma Program,
Northwestern Medicine

The Scleroderma Foundation has formal affiliations with nearly 50 scleroderma research and treatment centers in the U.S. To be designated as a “center,” a clinic must:

  • Demonstrate expertise in the care of patients with scleroderma. 
  • Conduct scleroderma research (clinical and/or observational and/or laboratory-based).
  • Conduct educational activities about scleroderma, and provide information about the advances in the care and treatment of patients with scleroderma to health care professionals and the public.

In the Chicago area, go to the Northwestern Scleroderma Program, Northwestern Medicine, located in Chicago.  

2018_KGS2_logo_WEB
 

Kids Get Scleroderma Too

October 26 & 27, Aurora, Colorado

The Rocky Mountain and Tri-State Chapters are excited to co-host “Kids Get Scleroderma Too” on October 26 and 27, 2018, at Children’s Hospital Colorado in Aurora, Colorado. This event is for youth and teens who have scleroderma, and their parents and siblings. Juvenile scleroderma experts from around the country will lead educational sessions and group discussions.  Friday night features a fun Halloween costume party for the whole family!  Scholarships are available.

register today: 2018KGS2.sclerodermatristate.org​

webinar Michigan addressing myths 2018
 

One on One with Dr. Maureen Mayes: Addressing the Scleroderma Myths

WEBINAR: August 15, 2018; 7 p.m. - 9 p.m. Eastern

This webinar is perfect for individuals with scleroderma and their caregivers.  It will provide you with updated and accurate information about scleroderma and will help to dispel the many scleroderma myths that we all hear. 

register

Join Inspire!
 

"Chronic Pain Management"

"Kristene" is a member of the scleroderma online community at Inspire.com.  She's been experiencing and wanted to learn from others in the community how they deal with their pain and what conversations they've had with their doctor.  

join the conversation at inspire.com

Stepping Out Logo 2018 Be Part of the Cure
 

Stepping Out Walks in August and September

Wisconsin, Indiana, and Ohio still have August Stepping Out to Cure Scleroderma walks and 5K runs.  There are seven more fundraising walks during September in Illinois, Missouri, Massachusetts, and Washington State. 

August 19 - Germantown, WI
August 25 - Highland, IN & Cleveland, OH
September 8 - Springfield, IL & St. Louis, MO
September 9 - Topsfield, MA
September 15 - Seattle, WA
September 16 - Westfield, MA
September 22 - Dixon, IL
September 30 - Boston, MA

sign up to walk today!

Discover Understand Overcome square
 

Now Accepting Scleroderma Research Grant Applications

DEADLINE:  September 17, 2018

The Scleroderma Foundation's peer-reviewed grant program offers two distinct funding opportunities designed to foster the development of innovative and high quality research in fields related to scleroderma.  These are the New Investigator Grant and the Established Investigator Grant.  To apply or to learn more, follow the link below, or call 800-722-4673.  

research grant applications

 
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Actelion JSN 2018


Boehringer Ingelheim 2018 Platinum National Sponsor


Bayer 2018

2018 Gilead

 

United Therapeutics 2018 Bronze Conference Sponsor

reata_horizontal_logo-2018-Bronze Natl


Arena Pharmaceuticals 2018 Corp Conf Sponsor

 

Corbus 2018 Corp Conf Sponsor

 

Genentech 2018 Corp Conf Sponsor

 

   

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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