COVID-19 Booster Shots for All

In a press release dated August 18, 2021, public health and medical experts from the U.S. Department of Health and Human Services (HHS) released a statement regarding COVID-19 booster shots for all. The statement included the senior-most health officials in the country from the CDC, FDA, NIH, the COVID-19 Response, and the COVID-19 Health Equity Task Force.

The joint statement cites data that "make it very clear that protection against SARS-CoV-2 infection begins to decrease over time." It goes on to say, "For that reason, we conclude that a booster shot will be needed to maximize vaccine-induced protection and prolong its durability."

This new policy is in addition to the FDA's August 12, 2021. authorization of booster shots for immunocompromised individuals.

For the general population, a plan has been developed to begin offering booster shots in the fall on a schedule that begins eight months after an individual's second dose. Booster shots are also anticipated for the Johnson & Johnson vaccine, pending review of data. Read the full press release on the U.S. FDA website for full details.

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Scleroderma Foundation Seeks Participants for a Patient Advisory Board

Deadline Extended to August 24

The Scleroderma Foundation is working with a global pharmaceutical company that is developing clinical trials in systemic sclerosis. We are seeking six (6) individuals to participate on a patient advisory board to share their experiences with representatives of the pharmaceutical company. Participants must meet at least one of the following criteria for inclusion, and we are seeking two (2) individuals who meet all of the criteria.

• Must be 18 years or older
• Previously enrolled in a clinical trial
• Have received medication through intravenous (IV) or subcutaneous (SC) delivery
• Previously have had a High-Resolution Computed Tomography (HRCT) scan
• Previously had a skin biopsy
• Diagnosed within the past 10 years
• Experience with and comfortable using Zoom or other online video conferencing platforms

If you meet all or one of the above criteria and are interested is participating in a 2-3 hour video conference, please send an email to: patientsaspartners@scleroderma.org. Your email must contain answers to the above questions (mark all that apply to you); your name; email address; city and state of residence. The deadline for responses has been extended to August 24, 2021.

Mental Health Focus Group

The Scleroderma Foundation will conduct a series of focus groups beginning this fall lead by the Gingsberg Center at the University of Michigan. The goal is to learn the current mental health needs of those persons living with scleroderma and their caregivers.

We are looking for individuals living with scleroderma and caregivers of persons living with scleroderma ages 18 years and older. Participants will be asked to answer questions about the current mental health needs in their lives. They’ll also complete a pre- and post-group interview/questionnaire. All interview and focus group content is confidential.

The groups will be conducted virtually and will be 30-40 minutes long. Individual interviews are also available for those unable to attend a larger focus group session.

Interested in participating? Please contact Laura Dyas at ldyas@scleroderma.org by September 6, 2021.

The 20%: A Virtual Support Group for Males Living with Scleroderma

ZOOM: August 25, 7 - 8 p.m. Eastern Time
Topic: Grief, Loss, Trauma and Scleroderma

To support the men with scleroderma in our community, the Michigan Chapter is hosting a virtual support group series just for men. Join the August 25 virtual group from 7 top 8 p.m. Eastern Time to discuss the emotions of grief, loss and trauma associated with scleroderma, and learn helpful tips to navigate these feelings. There will be time at the end to answer questions. Register now and find support and hope in the community.

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Financial Advocacy in RARE: Navigating the U.S. Health System for Young Adults

The transition to adulthood is a process and the experience of becoming an adult is different for everyone whether or not you have a rare disease. But if you have a rare disease, there are some extra challenges to think about, including navigating the healthcare system. Whether you are heading to college, into the workforce, or living at home with parents, you’ll need to know how to get health insurance coverage, find healthcare providers who understand your needs, and advocate for yourself when you need care. Knowing these basics and having plans in place can help to reduce lapses in health insurance coverage and ensure you have access to the medical care you need.

To aid you in that process, our friends at Global Genes produced a comprehensive guide that provides information and tools to help you have purposeful conversations with your family and care providers about care transitions. These conversations can prepare you to make the transition into adult care, set health goals, and work with your adult care team.

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Kids Get Scleroderma, Too! Save the Date

VIRTUAL: October 23, 2021

The 2021 Kids Get Scleroderma, Too! (KGS2) conference is a one-day event on October 23. KGS2 is for youth, ages 5 to 17, who have scleroderma, and for their parents or guardians and their siblings. The KGS2 conference focuses on education in an age-appropriate environment. Youth are divided into groups, 5 through 12 and 13 through 17, to facilitate learning and relationships. Parents and guardians have separate sessions tailored to their needs in raising a child with scleroderma. Siblings of a brother or sister who has scleroderma will also benefit from the experience.

To receive email updates when registration, scholarship, and programming information are available, please enter your email address here.

World Lung Day is September 25

The Scleroderma Foundation is proud to be a partner in World Lung Day (WLD), September 25, a day for lung health advocacy and action. WLD is an opportunity for us all to unite and promote better lung health globally. The theme this year is "Care for Your Lungs:" say no to tobacco, protect them through vaccination, breathe clean air, and take regular physical exercise.

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For those Who Serve Individuals on SSDI & SSI

WEBINAR: August 25, 2021; 3 p.m. Eastern Time

This month, Ticket to Work, a program of the Social Security Administration, is hosting a special WISE webinar for individuals and organizations that serve people who receive SSDI or SSI due to a disability. Specifically, the webinar will help people and organizations that are interested in learning:

• About the Ticket Program
• How to talk to their clients about the Ticket Program
• Ways to connect with Ticket Program service providers like you

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