With the month of August comes back to school preparation for our JM students around the country.

As summer winds down, we decided it is a good time to share resources on “Advocating for Your Child and Navigating School.” This post on our website thoughtfully covers the many considerations that should be taken into account for students with juvenile myositis.

You’ll find anything from understanding 504 and IEP plans to classroom accommodations for your student to ensure that your family is prepared for a successful semester. 

Last month, Cure JM hosted its first National Family Conference since 2019. The energy and unity on display were infectious, to say the least.

Our Executive Director, Jim Minow, was awed by his experience at the conference from every level and shared his perspective on the key takeaways from this year’s conference.

Jim’s 2023 conference recap is on our website, highlighting important outcomes and the path forward as we round out our momentous 20th year.

This year has been historic for improved care, research progress, patient advocacy, and volunteer leadership. Thank you all for your role in moving our mission this year and into the future.

Twenty years ago, Cure JM co-founders Tom and Shari Hume set up the Foundation’s first-ever DIY fundraiser to seed important new research funding. What was the fundraiser of choice? Considering the couple had young children, a lemonade stand was the perfect fit to launch a rare disease nonprofit during humble beginnings.

Fast forward 20 years and $23 million invested in juvenile myositis research later, we have come full circle, paying homage to our early DIY roots. You guessed it! In 2023, we are bringing the lemonade stand back!

We’re inviting families to join us between now and Labor Day to cap off a great summer with your own lemonade stand. This is a great opportunity for anyone in the family to join the fight in a fun way before heading back to school.

Click the button below to read the full story and join us in hosting your own lemonade stand.

The George Washington University Myositis Center is conducting a study to better understand how juvenile dermatomyositis (JDM) influences a person’s ability to participate in physical activities. The team would also like to observe any differences between people with JDM and their siblings who do NOT have JDM.

The study aims to:

• Provide researchers with valuable information about JDM and how it affects people’s ability to participate in physical activities. 
• Provide researchers with information about fatigue and how it affects individuals with JDM.
• Give physicians a better understanding of JDM.
• Support you (or your child) and others battling JDM by helping researchers learn how to approach and develop new and better treatments for JDM.

For more information on the study specifics and FAQs, visit jdmplay.smhs.gwu.edu or contact the study team at jdm@gwu.edu

As we celebrate a great summer and round out our 20th year, we are excited to share upcoming regional and virtual community events that will impact our mission for the rest of the year.

This updated page is your single stop for being in the know on upcoming chapter events, council meetings, and educational symposiums happening in person and virtually.

Click the button below for a full list of the latest events happening in your area or virtually to connect with others in our JM community.

Have a regional event or DIY fundraiser that you would like featured? Please email betsy.leon@curejm.org with the dates and details.