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Local Resources

THE POWER OF SUPPORT

Scleroderma is a tough disease. It can lead to relationship rifts, and challenges finding the energy to work or get out of bed each day! It wreaks physical and emotional turmoil in your life. You make doctor appointments then endure weeks or months waiting for them. Tests are ordered - some needing prior authorization - more waiting. You have blood work and wait, wait, wait for what seems like an eternity to receive results. People are getting impatient with you. Not understanding why you are so tired, why you can’t get motivated. They say “you don’t look sick” - a well-intentioned compliment - but difficult to hear when you feel awful.

Support groups can help. Perhaps the most powerful support group offering is a sense of empowerment in doing something to help yourselfJoin a support group and find people that understand you and listen to you! A group of friends that know how you feel, know your struggles. You deserve the opportunity to express your feelings, get advice, learn something new. You deserve a safe place where you can share your emotions without burdening loved ones (Ever feel you're being tuned out?). Our support groups offer safe havens. Your support group friends will understand your journey with scleroderma.

Visit our support group web page to find a group near you. If you don’t find a group nearby, consider starting one yourself! We will help you – find a meeting place, market your new group and produce meeting reminders. We'll also provide training and much more!

In the darkest hours of our lives, bright lights shine in those that rise above - helping themselves and others along their journey. Let your light shine - thank you!

Please contact Mary Beth Bobik-Kadylak, Director of Patient Education & Support at mbbkadylak@sclerodermatristate.org or 800-867-0885 for additional information. 

Support Group Leaders Retreat

Support Group Leaders Retreat

Education

What is Scleroderma

An overview of what is scleroderma. Details on types of scleroderma, details on how it is diagnosed. 

Lending Library
View lists of Books and DVDs that cover many of the issues that come with scleroderma along with empowering stories of advocacy, hope, and strength.

If you are interested in borrowing any information email or mail request to Mary Beth Bobik-Kadylak.

Sclerodermavideo.com
Free, online and available 24/7

YouTube
Scleroderma videos. Clips on awareness and advocacy.

Tri-State Video
A 10-minute informational video about Scleroderma featuring Actor Jason Alexander

The Scleroderma Exchange newsletter
Past and current editions of Tri-State Chapter Quarterly Newsletter.

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Support
Find a support group

If you are interested in starting a support group, email Mary Beth Bobik-Kadylak.

Tri-State Connect 
A new concept to provide support and education for scleroderma patients, family members, and caregivers. Monthly support for anyone who would like to attend without leaving your home. For more information email Mary Beth Bobik-Kadylak.  

How to Join:
Call in:  1-224-501-3412 use access code: 262-512-989

You can also join via computer, smartphone or tablet
Go to  https://www.gotomeet.me/SFTriState and connect with the audio and webcam!

Finding a Physician
View our network of Scleroderma Treatment Centers or email us for assistance.

Scleroderma Foundation Brochures: 
Find specific information on scleroderma and the Scleroderma Foundation

Inspire.com
Join a community of Scleroderma Patients all over the world 24/7. Share stories, rants, and motivation.  

Help For You and Your Family 
A comprehensive list of resources for alternative therapies, legal and disability advice, government agencies, insurance and more

National Scleroderma Foundation Weekly E-Newsletter
The Scleroderma Foundation produces and sends an electronic newsletter every Friday. The eLetter keeps you up-to-date about issues and information of interest to the scleroderma community, including research news, tips on how to manage your disease and lifestyle information.

As a subscriber, you'll also be the first to hear about information regarding our annual National Patient Education Conference and other special events for the autoimmune and rare disease community.

 

 

 

 

Research 

Participation in Clinical Trials
Find information on current government funded clinical trials and how you can participate. 

The Scleroderma Clinical Trials Consortium (SCTC)
The Scleroderma Clinical Trials Consortium is a charitable non-profit organization dedicated to finding better treatment for scleroderma. Member institutions of the SCTC conduct clinical treatment trials of new (and sometimes old) medications that appear promising for the treatment of scleroderma.

National Institute of Arthritis and Musculoskeletal Diseases

National Institutes of Health

DNA Repository

The Scleroderma Family Registry and DNA Repository is a research study whose objective is to identify the genes that influence scleroderma. 

 

 

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