National Scleroderma Foundation

Scleroderma Foundation

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eLetter #930 | August 13, 2021

	FDA Approves Additional Vaccine Dose for Certain Immunocompromised Individuals In a press release issued August 12, 2021, the U.S. F.D.A. announced that it amended the emergency use authorizations for both the Pfizer-BioNTech and the Moderna COVID-19 vaccines to allow for the use of an additional dose in certain immunocompromised individuals, specifically, solid organ transplant recipients or those who are diagnosed with conditions that are considered to have en equivalent level of immunocompromise. The Centers for Disease Control and Prevention's Advisory Committee on Immunization Practices is scheduled to meet today, Friday, August 13, 2021, to discuss further clinical recommendations regarding immunicompromised individuals. Today's action does not apply to people who are not immunocompromised. Please consult with your rheumatologist to determine how this action by the FDA might affect your need for an additional vaccine dose. READ
	Scleroderma Foundation Seeks Participants for a Patient Advisory Board 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. Responses must be received no later than August 20, 2021 for consideration.
	SYNC Meet Up ZOOM: Friday, August 13 at 7:00 p.m. Eastern Time SYNC (Scleroderma Young Adults Needing Connection) invites you to join their August 13 meeting for a general discussion among young adults between the ages of 18 and 42 looking to connect with other individuals affected by scleroderma. For questions, please email Amy Gietzen, agietzen@scleroderma.org, or Natalie Puccio, nataliepuccio18@gmail.com. REGISTER
	August 17 is National Nonprofit Day National Nonprofit Day is a time to educate, enlighten and empower others to make a difference by acknowledging the good work nonprofits do to help people across the world. Will you help spread awareness about the Scleroderma Foundation on Tuesday, August 17? Celebrate National Nonprofit Day with us by posting on social media how the Foundation supports you. Take a picture holding up a piece of paper, record a video, or type your response in a post. Use the hashtags #HowSFsupportsMe and #NationalNonprofitDay, and don't forget to @tag the Foundation in your pic so we can share your story! FACEBOOK • TWITTER • INSTAGRAM
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	Tips for Dealing with Wildfire Smoke The American Thoracic Society (ATS) has published advice for protecting yourself against the smoke and particles in the air from the scourge of wildfires happening in the western United States. The risk to life, the environment, and property also includes serious health risk for those downwind of the smoke. The ATS's information series includes ten basic steps you can take to stay safe, avoid inhaling smoke, and to protect your lungs. READ
	Using AirNow.gov During Wildfires An excellent resource to determine air quality as impacted by wildfire smoke is AirNow.gov. The website includes many maps and lots of information. They recommend using the AirNow Fire and Smoke Map to see the most helpful information, including data from the US Environmental Protection Agency and the US Forest Service. The map also features fine particle pollution data from the regulatory grade air pollution monitors that report to AirNow and from temporary monitors deployed by the U.S. Forest Service. AIRNOW
	Research Study to Evaluate an Online Fatigue Intervention Program Researchers from the University of New Mexico seek participants for a study to evaluate an online fatigue intervention program for adults. To participate, be a U.S. resident, 18 or older, have systemic sclerosis (SSc, systemic scleroderma). Study involves attending and participating in a 1½ hour virtual meeting once a week for 6 weeks, completing questionnaires at the start and end of study, and an interview at the conclusion. Compensation is offered. CONTACT: Janet Poole, Ph.D., O.T.R./L., jpoole@salud.unm.edu, (505) 272-8276, or Kristine Carandang, O.T.R./L., carandangkm@gmail.com, (626) 722-8761.
	The Differences Between PH and Hypertension While Pulmonary Hypertension and hypertension both refer to high blood pressure, they are markedly different from one another. Dive deeper into the differences @myPHteam. myPHteam
	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 REGISTER
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