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eLetter #877 | August 7, 2020  

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Carol Feghali-Bostwick PhD Caricature
Carol Feghali-Bostwick, Ph.D.

Fun Science: How to Extract DNA from Fruits
Carol Feghali-Bostwick, Ph.D., Medical University of South Carolina Medical College

KGS2 Kids Get Scleroderma Too logo SFVirtual University:
Kids Get Scleroderma, Too! Series

WEBINAR: August 12, 3 - 3:30 p.m. Eastern 

Together with Dr. Carol Feghali-Bostwick we will work to extract DNA from a fruit such as banana or strawberry. We will work step by step using ingredients found at home. We will also learn about DNA. This activity is recommended for kids of all ages but children under the age of 7 should have parental assistance. 

Download the resource PDF: Banana DNA Extraction Protocol.  

Materials needed for this activity:

  • 1/4 of a peeled ripe banana (you can also use strawberries)
  • 1/2 teaspoon clear liquid dishwashing soap (like Palmolive)
  • 1 teaspoon table salt
  • resealable zip-top bag (quart size)
  • very cold rubbing alcohol (isopropyl alcohol) placed in freezer ahead of time
  • coffee filter or gauze
  • narrow glass

REGISTER

YouTube 2020 Virtual University August 5

Virtual University Webinar Recording

VIDEO: Scleroderma Lung Disease, with Jerry Molitor, M.D., Ph.D., University of Minnesota Medical School. Originally aired August 5 as part of the Scleroderma Foundation's Virtual University, Patient Education Summer Series. Every Virtual University presentation is recorded and posted to the Foundation's YouTube channel, which can be accessed via the link below.

scleroderma.org/summerseriesvideos

Health Advocacy Summit August 8

Health Advocacy Summit 2020 Virtual Event

August 8, 2020, 11 a.m. - 9 p.m. Eastern Time

Join the Health Advocacy Summit for their international virtual event! Hosted on Saturday, August 8, participants will explore identities of being young and chronically ill through sessions such as mental health, minority health, and hear from speakers such as Katelyn Ohashi! We are excited to be an outreach partner for this event and hope that you might register. Registration is free.

REGISTER

TOSS scleroderma self management 

Taking Charge of Systemic Sclerosis (TOSS)

Often, persons with scleroderma do not know other people with the disease. They might live in a state where there is no chapter of the Scleroderma Foundation, or their community might not have a support group. "Taking Charge of Systemic Sclerosis” (TOSS) is a web-based self-management program designed to help you learn about scleroderma, to manage your symptoms, and to learn strategies to help you advocate for yourself.

Knowledge and advocacy skills need to be continually woven, like a basket, into one's daily life. Register today to gain skills and confidence to manage systemic sclerosis (SSc) symptoms and to develop strategies to advocate for yourself. Peer mentors will empower you to take control of your life and your healthcare.

LEARN MORE

NCCIH Clinical Digest Arthritis

Arthritis and Complementary Health Approaches

The July 2020 issue of the NCCIH Clinical Digest (National Center for Complementary and Integrative Health) summarizes current research about complementary health approaches for arthritis. Research to date suggests that some mind and body practices such as acupuncture, massage therapy, and tai chi may be helpful for osteoarthritis. Despite extensive research, it’s still uncertain whether glucosamine and chondroitin have a meaningful impact on symptoms or joint structure in osteoarthritis. There is some evidence that supplements containing omega-3 fatty acids, gamma-linolenic acid (GLA), or the herb thunder god vine may help relieve some rheumatoid arthritis symptoms.

READ

boehringer more than scleroderma kheesa

More than Scleroderma

A series of six scleroderma education webinar programs are being hosted nationally in August and September by one of the Scleroderma Foundation's partners, Boehringer Ingelheim. These programs are free and open to individuals affected by scleroderma and their family and friends. The Foundation is not managing registration and is not responsible for the content. When you register for a "More than Scleroderma" program, you are providing your contact information to a third party, Boehringer Ingelheim.

Webinar Dates:

  • Thursday, August 13, 2:00 PM (ET)
  • Wednesday, August 19, 5:30 PM (ET)
  • Thursday, August 27, 4:00 PM (ET)
  • Monday, September 14, 6:00 PM (ET)
  • Wednesday, September 16, 7:00 PM (ET)
  • Wednesday, September 23, 3:00 PM (ET)

CLICK HERE to register or CALL (55) 415-7492

Queen Latifah Boehringer More than Scleroderma

Queen Latifah Joins More than Scleroderma

Queen Latifah is linking up with More than Scleroderma to honor her mom, who lost her life to scleroderma with associated ILD after a long hard fight.

"Not a day goes by when I don’t think about my mom. I watched her struggle with scleroderma and want to share my story so others know they aren’t alone. Let's do this together." Queen Latifah

FOLLOW

 Virtual Stepping Out eLetter

walk couple dog masks trees

Keeping Our Promise

The Scleroderma Foundation made a promise 22 years ago to everyone affected by scleroderma.  That promise is our mission to provide support, education, and research.  In the words of CEO Robert Riggs, "As scary as it all may be, and as difficult and as sad as this is, this is not a time to step down. This is a time to step up, to dig deep, to get creative, and engage people in new ways to keep our community strong."

Going for a walk in a crowd is not safe right now. So the Foundation got creative and pivoted to virtual fundraising events. Fundraise, take a victory lap, and post a selfie on social media with the hashtag #VirtualSteppingOut. And remember, donations are accepted for at least 30 days after the event and longer in many cases.

August & September Virtual Fundraising Events:

STEPPING OUT

ACR Essential Eight COVID

The Essential Eight

The American College of Rheumatology (ACR) has created the "Essential Eight" resource for minimizing risk during the COVID-19 pandemic.

  1. Wash Hands
  2. Keep Safe Distance
  3. Limit Interactions
  4. Work from Home
  5. Protect Yourself
  6. Protect the Elderly
  7. Stay Vigilant
  8. Quarantine Yourself

The resource is available in a PDF infographic online.

ESSENTIAL EIGHT

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MSAB COVID-19 eLetter Graphic

COVID‑19 Information & Recommendations

From the Scleroderma Foundation's Medical & Scientific Advisory Board Leadership Committee
Reviewed July 1

The Foundation's Medical & Scientific Advisory Board (MSAB) Leadership Committee fully endorses recent recommendation by the American College of Rheumatology (ACR) in their “COVID-19 Clinical Guidance for Patients with Rheumatic Diseases” draft summary, which states that individuals who have rheumatic diseases, including scleroderma, who test positive for COVID-19 should temporarily discontinue sulfasalazine, methotrexate, leflunomide, immunosuppressants, non-IL-6 biologics and JAK inhibitors. The ACR COVID-19 Clinical Guidance Task Force also recommends that those who have confirmed COVID-19 may continue with anti-malarial therapies—namely hydroxychloroquine and chloroquine—and, in select circumstances, IL-6 inhibitors.

Information and recommendations from the Foundation's MSAB regarding COVID-19 and scleroderma are posted at www.scleroderma.org/covid19. This "living document" was most recently reviewed on July 1. Please check it from time to time for additional updates.

COVID‑19

Clinical Trial Opportunity

ClinicalTrials.gov

Clinical Trials mapYou can track clinical trials for scleroderma, systemic sclerosis (SSc), pulmonary hypertension, and more at ClinicalTrials.gov. This robust website is published and maintained by the National Institutes of Health, U.S. National Library of Medicine. Search options include trials that are recruiting, country, state, and more. States highlighted in red in the map (left) have the most scleroderma-related trials. This concentration in specific states is solely the result of the geographic location of the institutions that focus on scleroderma research.

You can also find information about scleroderma-related clinical trials on scleroderma.org/centers, where designated "Scleroderma Research and Treatment Centers" list the trials taking place in their institutions.

CLINICAL TRIALS

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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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