Dear Cure JM,


The Cure JM Foundation has always treasured the special role that grandparents play in their families and Cure JM. We hope you enjoy this collection of news specifically for you, our grandparents. 


Best regards,



The Cure JM Grandparent Council

A Council of Grandparents, For Grandparents

3:00 p.m.  Eastern

2:00 p.m.  Central

1:00 p.m.  Mountain

12:00 p.m. Pacific


The Grandparent Council meets on the 4th Thursday of every month.

Grandparent Council Call

Thursday, April 25th, 2024


We invite you to join our next Grandparent Council meeting on Thursday, April 25th, 2024. 


Connect with other grandparents and learn how to provide support to families along their JM journeys.

Register Now

On-going Grandparent Resources


Each month we will share a list of the available resources for Grandparents.


Link to Grandparent Facebook Group:

https://www.facebook.com/groups/curejmgrandparents


Link to Grandparent Resource Section of the Website:

https://www.curejm.org/support/jsf/epro-posts/tax/category:42/

Are you eager to make a meaningful impact and connect with a community committed to an important cause? The Cure JM Foundation welcomes passionate volunteers like you! Whether you can spare just a few moments or have more time to give, your dedication can help advance our mission.


Your skills and passion can make a real difference. If you have specific talents or ideas, we’d love to hear from you!


Click here to learn more about our current volunteer needs.


Please reach out to Shannon.Malloy@curejm.org to explore more opportunities. 


Every minute you contribute is a step towards a brighter future for those affected by juvenile myositis. Thank you for considering joining our team of dedicated volunteers – together, we can achieve so much more!


Learn More

Anna Ramsey has lived with juvenile myositis for most of her adolescent and adult life. Over the years, Anna has been actively involved in Cure JM as a fundraiser, an advocate, and most recently, the first-ever patient on the Board of Directors.


Having been on her journey for some time, Anna quickly got involved with Cure JM as a volunteer and fundraiser within months of her diagnosis to take action in her fight and the fight of others. As Anna puts it, “I decided to do something about it.” This early involvement became both rewarding and cathartic. Over time, Anna’s volunteer leadership continues to shine, and her willingness to help others has inspired her peers and the next generation of JM kids.


Beyond her role on the Board of Directors, Anna is also a founding member of the Cure JM Advocates Council, a group of young adults living with JM who are shaping ideas for improved care.


Recently, we interviewed Anna to get her thoughts on her involvement and inspiring leadership. Thank you, Anna, for all that you have done and continue to do for our mission!

Read More

Whether newly diagnosed or well into the JM journey, you’ve probably heard that sun and ultraviolet light can be a factor in triggering disease activity. Unfortunately, the harmful UV rays aren’t limited to tropical regions or only the summer months.


However, with summer on the way, this important topic is on our minds. Our families often wonder the best ways to protect themselves or their children during the most UV-intense months.


Cure JM is honored to present an “Ask the Doc” Town Hall on Sun Protection Tips and Tricks for Summer. In this session, Shelia Angeles-Han, MD, MSc, of Cincinnati Children’s Hospital (a member of the Cure JM Clinical Care Network) and Kalyani Marathe, MD, MPH Division Director of Dermatology at Cincinnati Children’s Hospital, share the importance of sun protection for our JM grandkids.


 Watch Dr. Marathe and Dr. Angeles-Han to learn more about:


·   Choosing and applying the best sunscreen for all skin colors

·   Choosing the proper sun-protective clothing

·   Why sunscreen and sun-protective clothing is important for JM patients

·   Considering sunscreen as a form of medicine


Learn More

Hundreds in our community are coming together nationwide to walk for a brighter future! 


You can join the fight by striding with us in your region!

 

Walk Strong events feature food, fun, and friendship as we celebrate the power of community and walk for progress.

 

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


  • Kansas City, KS - Saturday, April 27th
  • Reno, NV - Saturday, April 27th
  • Metro D.C. Sunday, April 28th
  • Pittsburgh, PA - Sunday, April 28th 
  • Dallas, TX - Saturday, May 4th
  • Chicago, IL - Sunday, May 5th
  • Pacific Northwest (Seattle) - Saturday, May 11th 
  • Cincinnati, OH - Sunday, May 19th
  • New York/ Connecticut Sunday, May 19th
  • Metro D.C. Sunday, September 22nd
  • Nor Cal - Saturday, September 28th
  • Houston, TX - Saturday, October 6th
  • Austin, TX - Saturday, October, 12th
  • Tampa, FL - Saturday, October 26th
  • Raleigh-Durham October - TBD
  • Nashville, TN - 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

“There is nothing more wonderful than the love and guidance a grandparent can give his or her grandchild.”   — Edward Fays, The Grandparents Treasure Chest.