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, January 25th, 2024


We invite you to join our first Grandparent Council meeting in the new year on Thursday, January 25th, 2024. 


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

Register Now

As the New Year rises, a hopeful horizon brightens for Cure JM. Celebrate the achievements with us as we review our community's impact and our goals for the new year.


We invite you to join us before the Grandparent's Meeting on January 23rd, 2024


1:00 p.m.  Eastern

12:00 p.m. Central

11:00 a.m.  Mountain

10:00 a.m. Pacific


Jim Minow, Executive Director, will update us on recent research breakthroughs, new treatment options, and plans to expand Cure JM’s Clinical Care Network.


Andrew Heaton, Chief Scientific Officer, will update families with the latest information on new treatments on the horizon, including deucravacitinib and vamorolone.


Shannon Malloy, Director of Family and Community Engagement, will update us on the latest developments in physician education programs, family education and support programs, and our plans for family connections in the coming year.


After the call, families are invited to stay on the line for a brief social time featuring breakout rooms for parents, grandparents, and young adult patients.

Register Now

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/

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, young adults, parents and grandparents.

 

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



  • Southern California - Saturday, February 24th
  • Kansas City - Saturday, April 13th
  • Dallas, TX - Saturday, April 20th 
  • Metro D.C. - Sunday, April 28th
  • Pittsburgh, PA - Sunday, April 28 
  • Chicagoland, IL - Sunday, May 5
  • Pacific Northwest - Saturday, May 11 
  • Cincinnati - Sunday, May 19
  • New York/ Connecticut - Sunday, May 19
  • Reno - June
  • Austin, TX - Saturday, October 5th
  • Houston, TX - October 12th
  • Tampa, Florida - Saturday, October 26th
  • Raleigh-Durham - 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

Austin Krainz began his childhood like many before his world forever changed due to a rare disease diagnosis. At an early age, Austin was fascinated with cars and enjoyed playing racing games and watching Formula 1 with his dad. The early childhood excitement was the spark of a budding passion. 


That early passion took a detour due to a juvenile dermatomyositis diagnosis when he was seven years old, after first showing signs of the disease a year and a half earlier. Austin was diagnosed during a time when little was known about JDM, and there were very few juvenile myositis specialists in the U.S. In fact, Austin began to travel outside of the country’s largest metropolitan city (his native New York City) and began treatment under JM pioneer Dr. Lauren Pachman. 


After battling for over a decade, Austin achieved remission and is pursuing professional racing in Porchse’s GT America series, fulfilling a childhood dream with his father by his side as a teammate and co-pilot.

Read Full Story

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