2016 National Patient Education Conference Updates

We are excited to announce that Mary Woolley, president and CEO, Research!America will be our opening keynote speaker.  Ms. Woolley will present Turning a Moment into a Movement: Your role in advocacy for Research on Friday, July 29.

We are also thrilled that Andrew Botieri, Founder of Total Peak Performance, will be our closing keynote speaking on Sunday, July 30.  Mr. Botieri will present "Got Adversity?"

The 18th annual National Patient Education Conference offers educational and networking opportunities for people living with scleroderma, their caregivers, family members and friends.  We also offer a kids program at the conference that is open to younger patients, their siblings or even the child of an adult patient.

Space is limited!  The discounted room rate is available during the conference as well as three days before and after, subject to availability, and is not guaranteed after July 7, 2016, nor if room block has sold out.

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Beta Sigma Phi Continues Its Support of the Scleroderma Foundation

 The California Councils of Beta Sigma Phi held their annual statewide convention in Bakersfield, California, May 12-15, 2016.  The sisters of Beta Sigma Phi have been supporting the work and mission of the Scleroderma Foundation since 1980. In fact, they were the first major, national organization to “adopt” scleroderma as a cause when the California Councils decided to support what was then the United Scleroderma Foundation. Since 1980, the California Councils and the Beta Sigma Phi international endowment have contributed over three quarters of a million dollars to support the Scleroderma Foundation and its Research Program.

Scleroderma Foundation National Director of Development and Research Tracey O’Connell Sperry attended this year’s celebration and had the opportunity to thank the members of Beta Sigma Phi for their continued generosity and support of the Foundation. She also reported on advances in scleroderma research. 

The relationship with Beta Sigma Phi began with one person who knew someone living with scleroderma and brought this cause to the forefront of the councils. The California councils support four causes annually, and we are proud of this long-standing relationship that, in addition to providing financial support, has raised awareness over the past 36 years. 

Video:  Understanding Lung Problems

The Federation of European Scleroderma Associations (FESCA), has released a series of videos that were recorded at the 4th Systemic Sclerosis World Congress earlier this year.  The workshops cover a variety of different topics and features.  This session addresses understanding lung problems and struggles with breathing.

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Applying for Social Security Disability Benefits

Social Security’s disability program provides medical and financial support to disabled individuals and their families in a time of need. The Social Security Act sets out a strict definition of disability.

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