Our Mission
To find a cure and better treatments for Juvenile Myositis and improve the lives of families affected by JM.

In This Issue:

🎈I Heart Rare - Our Proclamation of Thanks!

🎈Rare Experience Auction - Opening Soon

🎈Your Voice Matters: Transitioning to Adult Care

🎈2024 Regional Conferences and Family Day

🎈2024 Walk Strong National Schedule

🎈Pioneers in JM - Advocates Scholarship


In celebration of Rare Disease Month, we would like to honor all in our community affected by juvenile myositis, our rare disease cause. We thank each of you for your devotion to improving treatments and care for our kids, teens, and young adult patients. 


We dedicate this issue to you and all of our rare disease community for this special Rare Disease edition of the Cure JM Family News. Join us in celebrating the strength, resilience, and unity in our effort to make a difference for children and families battling JM.

February is Rare Disease Month


It's Rare Disease Month! Join other JM families to help us deliver a proclamation of thanks to the National Institutes of Health (NIH) for their critical support of rare diseases, including juvenile myositis. Let the NIH know that the work they do for rare diseases matters to you and your family, and you want their continued support in discovering better treatments and a cure!


Please sign and share!



Help us reach 1,000 signatures by Rare Disease Day, February 29, 2024. 


On February 29th, members of Cure JM's Advocates Council will deliver our Proclamation to Dr. Joni Rutter, Director of NIH’s National Center of Advancing Translational Sciences, at the NIH's Rare Disease Day Celebration. The event will be live-streamed globally!



Please forward this to friends and family and ask them to help make our rare voices heard! 

Sign Our Proclamation

At Cure JM, we are dedicated to helping children battling juvenile myositis. We are committed to making a real difference in the lives of those affected.


One way you can help is by registering to bid in our upcoming Rare Disease Auction.


By doing so, you not only contribute to ongoing research, treatment, and education efforts but also play a role in helping children affected by JM rediscover the joy of being kids.


The Cure JM Rare Experiences Auction opens February 24th at 9:00 am Eastern! To view auction items and details, click the button below.

Rare Disease Auction

Coming Full Circle - Alex's Rare Journey

As a child battling juvenile dermatomyositis, becoming a future marathon runner was the furthest thing from Alex Hackney’s mind. Not only did she not imagine completing a marathon, but she also never imagined that she’d one day strive to complete a circuit of marathons that would include the prestigious Chicago and New York Marathons. For 15 years, Alex’s childhood and teenage years were filled with the hurdles of juvenile myositis despite her best efforts to pursue the activities she loved, including soccer. Although there were difficult times, Alex attributes her competitive spirit and drive to the years of fighting a rare disease.


Recently, Alex returned to Chicago, the city where, for many years, she received care from Dr. Lauren Pachman to conquer the prestigious Chicago Marathon. Alex describes this accomplishment as a "surreal, full circle moment."


Follow Alex's inspiring JM journey and path to pursuing the world's major marathons.

Read Full Story

With our increasing teen and young adult community, we are working on an important program to help pediatric JM patients seamlessly transition into adult care.


We have created a confidential survey for young adult JM patients to complete. Your response will help us shape the direction of this new program.


Parents of young adult patients are welcome to complete the survey as well. All questions are optional.


We value your voice in helping us create important programs and resources for our community.

Take the Survey

We are excited to bring the Family Conference experience to the regional and local levels for all JM families nationwide in 2024. Join us for empowering connection and learning.  


Our families will join sessions with leading doctors, sharing the best treatment options, new research findings, and useful tips to improve your child's care.



Meet other JM families at an upcoming educational Family Day or Regional Conference in your area. Learn the latest in JM research and care while meeting others who share similar journeys.


Click here for a list of 2024 events and details.

View Events

Hundreds of Cure JM families and friends are coming together in their regions to walk together for a brighter future! 


You can join the fight by taking important steps towards progress and a cure!

 

Walk Strong events feature food, fun, and friendship as our families celebrate the power of community and walk for progress. There is fun for the whole family, including children, teens, and young adults.

 

Upcoming walks:  RSVP here to join a walk in your region!



  • Southern California - Saturday, February 24th
  • Kansas City - Saturday, April 27th
  • Dallas, TX - Saturday, April 20th 
  • Kansas City - Saturday, April 27th
  • Reno, NV - Saturday, April 27th
  • Pittsburgh, PA - Sunday, April 28th
  • Chicagoland, IL - Sunday, May 5th
  • Seattle, WA - Sunday, May 11th
  • Cincinnati, OH - Sunday, May 19th
  • New York/Connecticut - Sunday, May 19th
  • Metro D.C. - September -TBD
  • Austin, TX - Saturday, October 5th
  • Houston, TX - Saturday, October 12th
  • Tampa, FL - Saturday, October 26th
  • Raleigh-Durham, NC - October - TBD
  • Philadelphia, PA - October - TBD


Don’t see your town listed? Contact Nicole.Ryba@curejm.org to learn more about walking from home or starting a walk.

Learn More 

We are excited to share a special educational support opportunity for collegiate JM patients who are using their own experience to lead and inspire.


The Pioneers in JM Advocates Scholarship is a new scholarship program honoring the founding members of Cure JM’s inaugural Medical Advisory Board and pioneering JM researchers and clinicians, Drs. Lauren M. Pachman, Ann M. Reed and Lisa G. Rider.  


These scholarships are generously funded by founding board members.


The Pioneers in JM Advocates Scholarship is intended to be awarded to three deserving students with juvenile myositis who:


  •  Impact the juvenile myositis community through their volunteer and leadership efforts
  • Inspire the juvenile myositis community by overcoming adversity while empowering others to do the same


To learn more about this program and full details, click the button below.

Learn More

The Cure JM Family News Is Brought To You By:

Do you have a story you would like to share?

Please contact familynews@curejm.org

Cure JM Foundation

19309 Winmeade Drive, Suite 204

Leesburg, VA 20176

202.596.6267

info@curejm.org

curejm.org

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