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Cure JM Foundation eNews

Our Mission: To find a cure and better treatments for JM while improving the lives of families affected by JM.

September, 2019

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Free Webinar: Myositis Specific Antibodies

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Music to Inspire

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Two Trials Urgently Need Participants

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Walk Strong to Cure JM®

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Upcoming Events

DONATE

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FREE WEBINAR:
“Myositis Specific Antibodies”

This webinar will introduce you to the concept of Myositis Specific Antibodies, or MSAs.

Sara Sabbagh D.O.

Dr. Sara Sabbagh

What will you get from this webinar?

  • Learn how to have MSAs tested and the value of having them tested.
  • Learn how myositis-specific antibodies have improved our understanding of myositis by leading to the identification of certain clinical patterns that help doctors understand how the disease might progress in patients with certain MSAs.
  • Learn the value in understanding MSA's to help further personalize treatment options that your clinical team may consider.

This webinar is presented by Sara Sabbagh, D.O., Clinical Fellow, Muscle Disease Unit at the National Institute of Arthritis and Musculoskeletal and Skin Diseases at the National Institutes of Health (NIH).

 REGISTER NOW 


MUSIC TO INSPIRE

Lisa Sniderman singing.

Lisa performing at this year’s Walk Strong to Cure JM in Northern California.

Lisa Sniderman is a writer and musician from San Francisco who lives with dermatomyositis (DM). She’s been involved in the adult DM community for years, and when she was invited to perform at the 2011 The Myositis Conference in Las Vegas, she was introduced to the Cure JM Foundation. Once she did, she had a realization: “I realized that I wanted to give back, help, and inspire kids with the same disease I had.”

That started a long-standing devotion to Cure JM and our kids.

“In 2012, I was asked to share my story and perform for a Cure JM Festival in Hilsboro, OR, where we honored Mason Smedley, who had just passed away from complications of his JM.”

The year after, Lisa created the song, Perfect Day, to benefit Cure JM. In 2014, she shared her music with attendees of the National Family Conference. Years later, she continues her strong connection with Cure JM. In the last two years, she’s fundraised and performed for the Walk Strong to Cure JM events in Northern California.

Lisa’s songs bubble with energy and carry messages of promise and strength. She hopes her songs inspire others. “Sharing the message with kids with JM that even though we may have this disease, while our bodies are raging war on ourselves, it doesn't mean we can't have dreams, or keep them alive. I’m so happy that the I help to inspire moms and their kids with JM and give them hope for their futures, that funds I raise go directly to research and finding a cure for JM, that I help to raise awareness for a rare disease and how passionate, committed and supportive all the Cure JM families and Board Members are. Also knowing that by putting myself out there and allowing myself to be vulnerable by sharing my story, I can be a light to Cure JM parents and their kids.”

And what advice does she have for others that share the same drive to inspire?
“See if there is a regional, Cure JM chapter near you and reach out to find out about local events and attend to meet other parents and kids with JM. Attend Cure JM's national conference. Take an active role to the extent you can, and become part of the local community! If you have an idea to help raise awareness or funds, or your kid has a poem, song, video, or other artwork to help her/him heal, share it to inspire others.”

Lisa continues her inspirational work through song and writing. She just released her new memoir, A Light in the Darkness: Transcending Chronic Illness through the Power of Art and Attitude, which chronicles ten years of living with chronic illness, and just published her new video, Keep Shining, which explores her struggle with DM, disability and recovery.


TWO TRIALS THAT URGENTLY NEED PARTICIPANTS

AID Clinical Trial: Abatacept In Juvenile Dermatomyositis

The Abatacept clinical trial at George Washington University is currently enrolling patients with Juvenile Dermatomyositis (JDM), including adults and children who are at least 7 years old. Study participants must have moderately active disease despite treatment with prednisone and at least one other medication. Travel funds and compensation is available for study participants for five study visits after screening. Talk to your doctor about this trial or print out the materials below and show them to your doctor.  Your doctor can enroll you or get more information by contacting Hassan Awal at hawal@mfa.gwu.edu or call (202) 741-2389.
VIEW/PRINT A FLYER
MORE INFORMATION

Sodium Thiosulfate for Calcinosis Trial

Currently enrolling children or adults with JDM and DM who are over the age of seven. For more information, contact study coordinator Amanda Lynen at amanda.lynen@nih.gov or (301) 827.6736.Learn more at clinicaltrials.gov (identifier: NCT03267277)
VIEW/PRINT A FLYER


JOIN US AT A WALK NEAR YOU

Super Mom at Walk Strong to Cure JM event

Come together to support children, teens, and young adults fighting Juvenile Myositis.

 REGISTER HERE 

Find a Walk Strong® event near you:

  • Seattle, WA / Pacific Northwest - September 21
  • Washington, D.C. - September 21
  • New York - October 6
  • Massachusetts - October 12
  • Chicago - May 3, 2020
  • Houston - Spring 2020
  • Austin / San Antonio - Spring 2020
  • Southern California - Spring 2020
  • Central Florida - Spring 2020
  • Dallas-Ft. Worth - Spring 2020
  • Pittsburgh - Spring 2020
  • Ohio - Spring 2020
  • Northern California - Spring 2020
  • Philadelphia - Spring 2020
  • Minnesota - Spring 2020

Contact us at walks@curejm.org for more information or to get involved.


UPCOMING EVENTS

Woman and group of kids with Cure JM Balloons and Drawings

Learn more or RSVP here.

  • Christmas Shop for Cure JM
    November 2, Warsaw, IN
  • Holiday Yacht Party Benefiting Cure JM Foundation and Children’s Hospital of Los Angeles
    December 15, Marina del Rey, CA

Contact info@curejm.org for more information and to get involved.

Do you have a story you would like to share? Contact enews@curejm.org

 

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