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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.

December, 2018

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Thank You for Giving Hope to Children with JM!

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Your Donations at Work

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Walk Strong to Cure JM®

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Upcoming Events

Boy with Thank You sign

We're amazed and grateful to those of you that worked to give children with JM HOPE for the future. The funds you raised and gave during Giving Tuesday got us half way to our final goal. If you've given, we are so, so grateful. If you haven't given, we urge you to hit this button now.

Give Now

Here’s why giving is important: this is a critical season for Cure JM. Gifts we receive before December 31 will fund research in 2019. Our programs depend on your willingness to take action. Without it, we’ll lose the ability to fully fund research at institutions, adequately invest in gene studies, sufficiently support drug discovery, and will be unable to fully support the ‘best and the brightest’ of the next generation of healthcare professionals entering the JM field.

Make the choice to give, so we can fund crucial programs in 2019. Thank you! Please know that your generous choice will benefit thousands of children around the world that are bravely battling JM.


YOUR DONATIONS AT WORK

A crucial part of our mission is to fund the most promising JM research. We want you to get to know the work, and the people, we're funding.

Meet Drs. Annet van Royen-Kerkhof and Femke van Wijk. Learn about their Cure JM-funded, collaborative study on The Validation of Novel Biomarkers for Flare Prediction and Risk Profiling In JDM.

Dr. Annet van Royen-Kerkhof

"My name is Annet van Royen-Kerkhof, and I was trained as paediatrician-immunologist/rheumatologist. Currently, I am head of the Department of Pediatric Immunology, Rheumatology, Infectiology, Hematology and StemCell Transplantation of the Wilhelmina Children’s Hospital of the University Medical center in Utrecht, the Netherlands. The Wilhelmina Children’s Hospital is a tertiary referral center for systemic auto-immune disease in children, with options for intensive treatment such as stem cell transplantation.

My clinical work is focussed on improvement of care for children with juvenile dermatomyositis by developing tools to better monitor disease activity. This work is closely interrelated with fundamental research from the Laboratory of Translational Immunology of the UMCU, and the Child Development & Exercise Center of the UMCU. In close contact with patient organisations we focus on patient driven research, resulting in projects on personalized care and regarding symptoms of Fatigue and Fatigability.

From 2010-2016 I was chair of the JDM working party of PReS (Pediatric Rheumatology European Society). As a working party we participated in the SHARE project, to improve and standardize the care for children with Paediatric Rheumatic Diseases throughout Europe. Consensus-based guidelines for treatment and diagnosis of juvenile dermatomyositis were developed. In the current project on identification of biomarkers large centers in the world are involved (London, Liverpool, Toronto, Bethesda)."

Dr. Femke van Wijk

"My name is Femke van Wijk, and I was trained as a biomedical scientist. Currently, I work as an Associate Professor at the University Medical Centre Utrecht and my translational immunology research group is imbedded in the Laboratory of Translational Immunology. I have always been fascinated by how well the immune system is regulated, how adaptable it is, but also how badly it can go wrong. My research is therefore focused on human immune regulation in chronic inflammatory disease, addressing conceptual and mechanistic immunological questions with a strong link to the clinic, both in paediatric and adult patients. By unravelling the key immunological pathways that are involved in the chronic inflammatory processes we aim capture immune fingerprints and bio-profiles of disease and disease subtypes. The strong collaboration with clinicians also stimulates translation of our findings into clinical or diagnostic applications, e.g. tools to monitor disease or predict disease or treatment outcomes. Together with Dr. Annet van Royen MD, and Felicitas Belutti-Enders MD (former PhD student) our group has identified and validated a novel biomarker for juvenile dermatomyositis (JDM) and we have invested in building a national biobank for JDM samples. We have now established a JDM research program that involves PhD student Judith Wienke MD, and exchange research fellow and pediatric rheumatologist Butsabong Lerkvaleekul MD from Bangkok University in Thailand, and many national and international collaborations.

For JDM we successfully identified biomarkers (Galactin-9 and IP-10) for monitoring disease activity.

The current grant will enable us to follow-up children with JDM for a longer period of time, to see if galactin-9 can be used as a potential predictor of a flare in JDM disease activity, as was seen in pilot data. Potentially galectin-9 can be used to guide tapering of corticosteroids, which may enable personalized care.

We hope that in the next five years we will be able to design an individual treatment scheme for very child with JDM, based on an algorithm, including results of disease activity at onset, skin scores, autoantibodies and biomarkers. Thus, functional outcome will be improved and overtreatment (mainly with corticosteroids) can be minimized."


JOIN US AT A WALK NEAR YOU

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

 REGISTER HERE 

Find a Walk Strong® event near you:

  • Houston, TX- Saturday, February 9, 2019
  • Austin-San Antonio, TX- Saturday, February 9, 2019
  • Southern California - Saturday, February 23, 2019
  • Central Florida - Saturday, March 2, 2019
  • Dallas-Fort Worth. TX- March, 2019
  • Pittsburgh, PA – Saturday, April 13, 2019
  • Northern California - Saturday, May 4, 2019
  • Philadelphia, PA - Saturday, May 4, 2019
  • Columbus, OH - May, 2019
  • Minneapolis, MN - Saturday, June 1, 2019
  • Chicago, IL - Sunday, June 23, 2019
  • Washington, D.C. - Fall, 2019
  • New York - Fall, 2019
  • Massachusetts - Fall, 2019
  • Seattle, WA / Pacific Northwest - Fall, 2019
  • New York - Fall, 2019

Contact us at for more information or to get involved.


UPCOMING EVENTS

Cure JM Family of 5 at event.

Learn more or RSVP here.

  • Holiday Party benefiting Cure JM and CHLA,
    Sunday, December 16, Marina Del Ray, CA
  • Dance-a-thon for Cure JM
    Saturday, February 9, 2019, Dallas, TX
  • Northern California Chapter Social and Educational Event
    Saturday, February 23rd, 2019, San Jose, CA
  • LivLifeStrong 5k Run/Walk for Cure JM
    March, 2019, Camarillo CA
  • Cure JM Foundation 13th National Family Conference and Fundraiser
    June 21st - 23rd, 2019, Oak Brook, IL
  • 6th Annual Cowboy Brad Concert for Cure JM
    Saturday, July 13, 2019, Estes Park, CO

Contact for more information and to get involved.

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