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eLetter #850 | January 31, 2020  

Michigan Parents Virtual Support Group

 

Parents of Children with Scleroderma Support Group Series

Virtual Meeting, February 5, 2020, 7:30 p.m. Eastern

The Parents of Children with Scleroderma virtual support group uses Zoom, an online meeting platform, to make it easy to connect with other parents and learn about important issues specific to juvenile scleroderma. This is the first of six virtual meetings during 2020:

  • February 5 - What to do When You are Not Getting Medical Answers Quickly Enough.
  • April 1 - The Overwhelming Feelings of Parenting a Child with a Chronic Illness
  • June 3 - Finding Resources to Help Pay for the Cost of Your Child’s Medical Care and Medications
  • August 5 - Helping Your Child Adjust to a New School Year
  • October 7 - Where to Find Medical Attention for Your Child
  • December 2 - Unsolicited Advice and Scleroderma: How to Manage Those Around You

Organized by the Michigan Chapter

JOIN

Advocacy Booth 2019 Conference

 

I Donate. What More Can I Do?

You can advocate! Be a scleroderma advocate for better public policies that affect individuals who have scleroderma. Sign up for Action Alerts.

Learn about the proposed legislation in Congress right now, called the "National Commission on Scleroderma and Fibrotic Diseases Act of 2019." It's a bipartisan and budget-neutral bill to coordinate research related to scleroderma and other fibrotic diseases--research that is already funded by the National Institutes of Health. The bill exists in both the House (H.R. 3446) and the Senate (S. 2477).

Learn more and take action!

ADVOCACY

2020 National Conference E-Alert

 

Apply for a Conference Scholarship!

March 18 is the deadline for conference scholarship applications to be received in the Foundation's national office. Detailed instructions are included on the form, which is available on the National Conference website.

The National Patient Education Conference takes place in Bellevue, Washington, July 17-19, 2020.

Join others with scleroderma "Climbing Toward a Cure!" Learn from the top scleroderma experts in the world. Connect with others who have scleroderma. Talk with researchers in person.

SCHOLARSHIP

Designated Scleroderma Research & Treatment Center SF Lo

 

Scleroderma Research & Treatment Centers

There are more than 50 designated scleroderma research and treatment centers in 23 states across the country. An institution is designated a "center" by the Scleroderma Foundation because they meet a high standard of care and patient services that address the complex needs of individuals who have scleroderma.

To be designated a "center" an institution must meet the following criteria:

  • 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.

CENTERS

myPHteam be kind

 

myPHteam

How we 𝙇𝙊𝙊𝙆 and how we 𝙁𝙀𝙀𝙇 don't always match up! Sometimes we put in extra effort just to look 𝙊𝙆 when we are feeling extra 𝙔𝙐𝘾𝙆𝙔. 😪 People close to you won't always understand that.

Connect with people who DO!

CONNECT

Stepping Out Logo 2018 Be Part of the Cure

 

Be Part of the Cure!

You become part of the cure when you raise money at a Stepping Out to Cure Scleroderma walk or 5K run. Stepping Out is the signature fundraising event for the Scleroderma Foundation. Stepping Out is a time to rally family and friends, and whole communities to generate funding for the Foundation's mission: support, education, and research.

Visit the Foundation website to learn walks and 5K runs during 2020.

STEPPING OUT

Inspire App 2020

 

Be Part of the Cure!

We are excited to share with you the new mobile app from our partner Inspire. We are confident the app will provide an even better experience in our online community on Inspire so members can engage with others and find the social, emotional support they need. (Works with iPhone and iPad.)

Learn more about the app that will provide you with the opportunity to learn and connect with others in the online scleroderma community anywhere, anytime.

www.Inspire.com/app

Clinical Trial Opportunities

Yale Scleroderma Program Kadmon Study

 

SPIN Eating Well with Scleroderma Focus Group 2020
 
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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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