Kids Get Scleroderma, Too! Virtual Conference

VIRTUAL: October 22, 2022

Sign up now for the 2022 Kids Get Scleroderma, Too! Conference (KGS2). This virtual education conference is geared toward parents, guardians, and juveniles affected by scleroderma. Stay tuned for more information on conference programming!

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Caregivers Connection Support Group Meeting

ZOOM: September 17, 2022; 10 a.m. Mountain

Sara Clement, Southern Colorado Support Group Leader, will be hosting the Caregivers Connection Support Group Meeting on September 17. All caregivers are welcome to join. To attend, request the Zoom link by sending an email to Sara, at sarc56@gmail.com.

Grupo Bilingüe de Apoyo - Taller "Liderando mi Vida"

Fecha: 17 de Septiembre, 2022

El Grupo Bilingüe de Apoyo de la Fundación Nacional de Esclerodermia te invita a su reunión vía zoom "Liderando mi Vida", dirigido a todos aquellos pacientes con esclerodermia que deseen mejorar los efectos del estrés.

¡Únete a esta extraordinaria experiencia de aprendizaje y empieza a construir la vida que quieres con lo que ya eres y tienes!

Hora: 11:00 am EST
9:00 am (Costa Rica)
10:00 am (Ecuador, Colombia, México, Panamá, Perú)
11:00 am (Chile, USA)
12:00 pm (Argentina)
5:00 pm (España)

Por favor envíe sus preguntas al correo electrónico miamiradgroup@gmail.com antes de la reunión. A continuación, enlace para registrarse al evento

REGISTRARSE

National Scleroderma Foundation Minnesota Chapter Fall Mind Body Conference

ZOOM: October 15, 2022; 9 a.m. Eastern

The mind body connection can play an important role in autoimmune health. If you are interested in learning more about the mind body connection, sign up for the Mind Body Virtual Conference on October 15. The conference will cover topics such as "The Happiness Practice," "Research and Reasons for Mindfulness," and "Mind-Gut Connection." To learn more and sign up, visit the link!

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Become a Member Today

For only $25 a year ($35 USD for those living outside of the USA), you can support our mission and gain special access to our quarterly magazine, the Voice, along with a discounted registration fee to our annual National Scleroderma Conference. 

Become a member yourself or give the gift of membership to a friend or family member by completing our online membership form or calling us toll-free at (800) 722-HOPE [4673].

MEMBERSHIP

Study Tests Immunotherapy in People with Cancer and Autoimmune Diseases

If you are an individual living with scleroderma and cancer, you might be eligible to take part in a new study focused on immunotherapy that is sponsored by the National Cancer Institute. This National Cancer Institute clinical trial is testing an immunotherapy drug (an anti-PD1 inhibitor, called nivolumab or Opdivo) in patients who have both cancer and an autoimmune disease, such as scleroderma. 

The trial’s scientific evidence could help develop new treatments for patients with scleroderma and help doctors better manage and prevent side effects from promising new treatments that are given to patients with autoimmune conditions who are otherwise good candidates for immune-based treatments for their cancer. The trials will take place in centers across the country, which can be seen in the link below. For participants at the trial locations in major cancer centers throughout the United States and at Princess Margaret in Toronto, Canada, the study drug will come at no cost, and treatment should be covered by insurance. Visit this link to learn more about the trial.

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Individuals With Scleroderma Without Lung Disease Needed to Study a Non-invasive Lung Function Test to Predict Early Airway Injury.

National Jewish Health Rheumatology investigators are conducting a study of individuals with scleroderma without known lung disease to determine if a new lung function test (called Lung Clearance Index) can detect subtle small airway abnormalities that may predict development of lung scarring.
ClinicalTrials.gov NCT 04535245
 

Qualifications include:

-Diagnosis of scleroderma without lung disease by a board-certified rheumatologist.
-Men or women ages 21-75
-Must be able to perform seated breathing tests.

For more information and to enroll in this study, please contact:

Mary Gill RN at Gillm@njhealth.org or Principal investigator Richard Meehan MD at (303) 398-1443.  

Co-investigators: Liudmila Kastsianok MD, Mehrnaz Maleki MD, Lauren Zell-Baan MPH, PhDc, and Kristen Demoruelle MD PhD.

NOTE: Requires a one-time study visit at National Jewish Health in Denver, Colorado.

Fathers with Scleroderma Needed for Survey Research Study on Parenting

Researchers from the University of New Mexico are seeking participants for a study exploring the impact of symptoms, such as pain and fatigue, on parenting in fathers who have systemic sclerosis (scleroderma). Fathers with scleroderma who have children 18 years and younger living with them may be eligible to participate in the survey study. This study was approved by the UNM Human Research Review Committee (HRRC 21-209). For more information about the study and the eligibility requirements, please contact Janet Poole PhD, OTR/L, at jpoole@salud.unm.edu or (505) 272-8276.

Mogil's Mobcast with Eileen Laird

On Episode 30 of Mogil’s Mobcast, Ann interviews Eileen Laird, who is an author and podcast host living with an autoimmune disease. The episode discusses Eileen’s journey with rheumatoid arthritis. During the episode, she talks about how diet, lifestyle, and mindset have helped her along the way and ultimately led her to write her book, ‘Healing Mindset: A Guide to Mind-Body Connection for People with Autoimmune Disease.’ You can follow Eileen on Instagram and Facebook at @phoenixhelix to learn more about her journey and work. 

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