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

In This Issue :


🎈20 Years of Volunteer Impact - Join Us

🎈Volunteer Spotlight - Alexandra Hackney "Spreading Hope Through Experience"

🎈Volunteer Leadership Spotlight - Kristine Alderfer

🎈Serving His Way - Luke Ryan's DIY Fundraising

🎈Why I Walk from Home - Stacey Douglass


In celebration of National Volunteer Month, we would like to honor all in our community that volunteer their time and talents to drive our mission for those affected by juvenile myositis. We thank each of you for your tireless devotion to improving treatments and care for our kids, teens, and young adult patients.


We dedicate this issue to you and all of the volunteers for this special edition of the Cure JM Family News.

 
 
 

20 Years of Volunteer Impact!

The Cure JM Foundation is proud and astonished by the power that our volunteers have provided to our mission over the past 20 years.


As a volunteer-led and driven organization, participation from our community of patients, parents, grandparents, and friends is the powerful engine behind our progress.


We have seen significant progress in improved care, treatments, research, and support since our humble beginnings. We would not be where we are today without each of you.


We have accomplished so much together, but our work is far from done. With your participation, we can move progress to unprecedented levels for generations to come.


If you would like to learn more about how you can volunteer, click the button below.

Volunteer Now
 
 

Volunteer Spotlight: Alexandra Hackney

Meet Alexandra Hackney, a young adult who battled JM for 13 years and is now using her own experience to provide hope, inspiration, and coping skills to newly diagnosed teens and young adults.


Alexandra supports others affected by juvenile myositis as a Peer-Support Representative for patients aged 18-30. She also serves as one of the volunteer leaders of Cure JM’s newly formed Advocates Council for young adult patients, making her voice heard as new clinical trials and treatments are planned.


We are so grateful for Alexandra's efforts to move our mission for future generations of juvenile myositis patients. Click below to learn more about Alexandra and her inspiring story.

Alexandra's Story
 
 

Leadership Spotlight: Kristine Alderfer

As a member of the Cure JM community, you have likely heard the name Kristine Alderfer, a devoted parent of a teen with JM who has become a leader, serving as the President of our Board of Directors.


Kristine has been involved in Cure JM through volunteer roles for many years, and her involvement has become a family affair, as her daughter Katherine is a patient advocate for others with the disease. For over a decade, the Alderfer family has volunteered their time and talents to deliver a lasting impact on our mission. The family has hosted countless JM research fundraisers, including Christmas Shop for a Cure, Evening Under The Stars, and Cure JM marathons.


Most recently, Kristine has taken her leadership to new heights, serving as the Volunteer Chair of Cure JM's National Family Conference.


We would like to thank the Alderfer family for carrying out the work that supports our community. Click below to hear about Kristine and Katherine's rare disease journey.

Kristine's Story
 
 

Fighting JM His Way: Luke Ryan

Meet Luke Ryan, a passionate parent, and JM advocate who uses his family's passions to raise funds for important juvenile myositis research.


Luke serves as the Chair of Cure JM's Family Fundraising Council and enjoys helping other families put their passions and hobbies to good use by combating JM through DIY fundraising. From bowling to gaming and backyard festivals, the Ryan family puts the FUN in fundraising!


As we celebrate volunteer service in the month of April, we recognize that devoted volunteers like Luke and the Ryan family make progress possible.



Join us in the fight to end JM by helping us host 20 DIY fundraisers to celebrate our 20th year! Hear more about how you can get involved by watching this video.

Watch Video
 
 

Walk Strong from Home, Represent Your State!

As a fellow JM Parent, I wanted to share why I'm participating in the Walk Strong from Home, Cure JM's signature national fundraiser and volunteer-led initiative.    


This year, I'm walking for my son Ronan and other heroic JM warriors. 


"My son is my inspiration and hero. His battle has become my own, and I wish I could be in his place during the tough times. I walk because I know Ronan and others with juvenile myositis desperately need better treatments and, one day, a cure so they can enjoy the life they deserve. I'm representing the state of Florida. Please join me in representing your state by walking from home."


Walking from home is an easy and fun way to join the fight in your own community on your own time! Sign up to walk from home and represent your state at www.curejm.org/walkstrong.


You can walk from home any day between now and July 4th.

Sign Up
 
 

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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