Support Education Research
Please leave this field empty
Scleroderma Foundation
Homepage | Forward to a Friend | Make a Donation
20th anniversary Scleroderma Foundation logo 72 dpi banner
eLetter #754 | March 16, 2018  
conference scholarship

Scholarship Deadline is March 21 to Attend National Patient Education Conference

March 21 is the deadline for conference scholarship applications to arrive in the Foundation office. Scholarships are available for first-time attendees (adults and children) who have scleroderma, and the parent caregiver of a minor who has scleroderma.  

www.scleroderma.org/scholarship

 Delaware Valley Chapter Logo

Support Groups of Delaware Valley

Support groups enable individuals with scleroderma to connect, and it gives them a chance to meet and exchange information with others who face similar problems.  Groups also host expert speakers from time to time.

There are many Scleroderma Foundation-affiliated support groups around the country, although some geographic areas are less well represented. Each week, we highlight support groups associated with a particular chapter.  The Delaware Valley Chapter (Delaware, Eastern Pennsylvania, and Southern New Jersey) hosts eight groups, including an email group, an online group, and a telephone group.

Support groups in Delaware, Eastern Pennsylvania, and Southern New Jersey

KGS2 Kids Get Scleroderma Too October 2018 

KGS2 - Kids Get Scleroderma Too!
Children's Hospital Colorado, October 26 & 27, 2018

SAVE THE DATE and join the email list to learn about scholarships and registration for this educational program about juvenile scleroderma held in Aurora, Colorado, and co-sponsored by the Rocky Mountain and Tri-State chapters.  To join the email list, click one of the links below to send an email asking to be added.    

Select a mailing list to join:
webinar spiral notebook

Grassroots Advocacy Webinar
March 26, 2 p.m. Eastern

Join our monthly grassroots advocacy training webinar.   

webinar

Facebook

"Like" Us on Facebook

Our Facebook page is a great way to connect with the scleroderma community online.

Facebook.com/sclerodermaUS

 Healthline.com logo

NORD Logo horizontal

The "Stronger Scholarship"

Healthline, a consumer health information website, and NORD, the National Organization for Rare Disorders, team up to offer four scholarships of $5,000 each to assist and empower college students who are making an impact on rare and/or chronic diseases through research, patient advocacy, raising awareness, or community building. Application period is March 1 - May 1, 2018.

Read about eligibility and how to apply

 2018 Conference Save the Date 180x270

Are You Going to Philly?

REGISTER ONLINE for the 2018 National Patient Education Conference, July 27-29, in Philadelphia:  scleroderma.org/conference.

If you prefer to mail your registration,
download a PDF registration form and send in a hard copy.

Hotel information is also online.  To receive the group room rate of $169, call Loews Philadelphia Hotel, (888) 575-6397, and mention the Scleroderma Foundation conference, or click here to book your room via Loews' online system.

 Stepping Out Logo Resized

Support a Stepping Out Walker

It's easy to donate in support of someone walking in a Stepping Out event.  Follow the link below to search for their name on the Stepping Out website.  

Drug Development 
 ibio-logo.png

iBio Selects Lead Candidate for its Fibrosis Therapeutics Program

iBio, Inc. issued a press release on March 14, 2018, reporting that it selected a fusion protein (E4-Fc) as its lead candidate for further development of a drug against fibrotic deases, including systemic sclerosis and idiopathic pulmonary fibrosis.

The selection is based on laboratory work by Dr. Carol Feghali-Bostwick and collaborators, who demonstrated that a 48-amino acid peptide derived from endostatin, named E4, can inhibit and reverse dermal fibrosis.    

(Dr. Feghali-Bostwick is a member of the Scleroderma Foundation's Board of Directors and its Medical & Scientific Advisory Board.)

Clinical Trial Update

BRAVOS study logo crop
BRAVOS study logo

BRAVOS Study

Diffuse cutaneous systemic sclerosis (dcSSc) is an autoimmune disease also known as progressive scleroderma. The BRAVOS clinical trial is currently enrolling scleroderma patients to determine the safety and tolerability of brentuximab vedotin, a drug that is FDA-approved for the treatment of Hodgkin’s and other lymphomas.

The BRAVOS study is being conducted at research centers across the United States. You may be eligible to participate in the BRAVOS study if you:

  • Are 18 to 70 years old
  • Have been diagnosed with dcSSc
  • Have had dcSSc for 5 or fewer years
  • Are on ongoing immunosuppressive therapy with one of the following: methotrexate, mycophenolate mofetil or azathioprine
Learn more about the BRAVOS study on clinicaltrials.gov (NCT03222492) or the study website, www.bravos-study.org.

 
Quick Links
Advocacy
Contact Us
Become a Member
About Scleroderma
Calendar of Events
Online Chat
Store
Make a gift
Home
 
facebook_32.png
twitter_32.png
2016 Instagram
Youtube_32x32.png
 

Diamond
National Sponsor
Actelion JSN 2018






 
 

 

   

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.

Powered by Blackbaud  Unsubscribe | Visit our web site | Contact Us | Donate
300 Rosewood Drive, Suite 105, Danvers, MA 01923 tel: 800-722-HOPE (4673)
© 2019 All rights reserved.