COVID-19 Vaccine Response in Autoimmune Diseases

Researchers at the University of Pittsburgh are conducting the CoVER study to better understand the effects of COVID-19 vaccines in individuals who have autoimmune diseases. The study is recruiting individuals with rheumatoid arthritis, Sjogren’s syndrome, myositis, or scleroderma, who have received a COVID-19 vaccine. Participants will be asked to provide three to four blood samples and answer periodic online questionnaire assessments over the course of a year to report medications and changes in autoimmune disease symptoms. Eligible participants:

• Ages 18 and up
• Diagnosed by a rheumatologist with Rheumatoid Arthritis (RA), Systemic Sclerosis (scleroderma), Idiopathic Inflammatory Myopathy (myositis) or Sjogren’s Syndrome
• Willing to get, or has already received a COVID-19 vaccine or booster
• Willing to provide blood samples

To enroll in the study, or for more information email covidcoverstudy@upmc.edu.

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COVID-19 Update

VIDEO: July 2021, National Scleroderma Conference

During the virtual National Scleroderma Conference in July of this year, Jessica Gordon, MD, MSc, and Robert Spiera, MD, of the Hospital for Special Surgery presented an update on COVID-19, vaccinations, and other important health updates.

Each week, the eLetter will feature another video presentation from the 2021 conference. 

WATCH

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

ZOOM: Wed., Sept. 22; 7 to 8 p.m. Eastern Time
TOPIC: Intimacy and Scleroderma

To support the men with scleroderma in our community, the Michigan Chapter is hosting a virtual support group series just for them. Join the September virtual group on the 22nd from 7 to 8 p.m. Eastern. The discussion will be about intimacy as it relates to the physical and mental changes of scleroderma. The group will also review helpful tips and leave time for questions. Register now and find support and hope in the community.

REGISTER

Rocky Mountain Scleroderma Education Summit

ZOOM: Sat., Sept. 25; 10 a.m. to 1:45 p.m. Mountain Time

Sign up for one of three virtual educational sessions hosted by the Rocky Mountain Chapter on Saturday, September 25.

10:00 a.m. - 11:15 a.m. MDT: Get Moving Again: Accessible Yoga, Breathing, and Improved Gut Health. Rachel Lando and Dr. Laura Pace . Register

11:30 a.m. - 12:15 p.m. MDT: Grin and Bear It - Strategies for Living With a Small Mouth. Dr. Sandy Vojik and Dr. David Leader. Register

12:30 p.m. - 1:45 p.m. MDT: Things Your Doctor Never Told You: Sex, Drugs, and Other Taboo Topics. Comedian Karen Vasquez, Dr. Kelli Gross, Dr. Erica Johnson, Dr. Jessica Farrell, and Dr. JoAnna Harper. Register

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.

Permission Cards

If you've ever been frustrated when in a restaurant or some other public venue and the server or other staff can't understand the needs related to your disease, using a "permission" card can go a long way in communicating effectively. An organization called G-PACT produces four types of cards: restaurant, venue, bathroom access, and backpack accommodation. Visit the link below to request cards via the mail. G-PACT which is dedicated to increasing awareness of Gastroparesis (GP), Chronic Intestinal Pseudo-obstruction (CIP), and Colonic Inertia (CI) among medical professionals, patients, and the general population.

PERMISSION CARDS

Rheumatic Disease Awareness Month

September is Rheumatic Disease Awareness Month, created to raise awareness of over 100 rheumatic diseases that affect millions of people each day. The Rheumatology Research Foundation will share educational information and spotlight RheumChampions throughout the month on Facebook, Twitter, and Instagram.

Rheum4You: Patient Resource Guide. The American College of Rheumatology and Simple Tasks have compiled accurate and trusted resources for people with rheumatic disease during family planning, pregnancy, and early parenting.

FACT SHEET

Pulmonary Fibrosis Awareness Month

Each September, join with those who have been impacted by pulmonary fibrosis worldwide to unite for Pulmonary Fibrosis Awareness Month. This initiative relies heavily on social media participation to spread the word about pulmonary fibrosis all over the world. One of the first steps you can take is to follow and interact with the Pulmonary Fibrosis Foundation on social media, using their handle, @pfforg, and get social with hashtags #PFMonth and #BlueUp4PF.

Facebook | Twitter | Instagram | YouTube

Proud Partner with World Lung Day

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.

LEARN MORE

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, 2021. The KGS2 conference focuses on education related to both the localized and systemic forms of scleroderma. Parents and guardians will have specialized education to help their journey in raising a child with scleroderma.

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

9th PeDRA Annual Conference

VIRTUAL: October 14-15, 2021

The Pediatric Dermatology Research Alliance (PeDRA) will hold its ninth annual conference virtually October 14-15, 2021. Free registration is available to all patient stakeholders until September 20, after which there will be a $15 fee. This applies to patients and parents as well as organizational staff and leadership. To register for free, follow this link and use the “Community Early Registration” category.

LEARN MORE

Ticket to Work: Support on Your Journey to Employment

VIRTUAL: Wed., Sept. 22, 2021, 3-4:30 p.m. Eastern Time

If you receive Social Security disability benefits (SSDI/SSI), you probably have questions about how work will affect your benefits. Join ChooseWork on September 22 at 3 p.m. Eastern Time as they answer some of your questions and tell you how you can get started with Social Security’s Ticket to Work Program! 

CHOOSEWORK

Quiz: Can You Differentiate Pulmonary Hypertension From Hypertension?

If you’re living with Pulmonary Hypertension or hypertension, you might be curious about the relationship between them. Take this five-question quiz from myPHteam to better understand the differences between these two conditions.

myPHteam

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