Cure JM Foundation

Cure JM Foundation's mission is to find a cure and better treatments for Juvenile Myositis (JM)

JM attacks children of all ages, causing a variety of debilitating symptoms, including –
- muscle weakness and pain
- severe fatigue
- swallowing and digestive difficulties
- lung and heart problems
- rashes
- vasculitic ulcers
- calcinosis

Some children may experience remission, while others will battle JM their entire lives and complications from this disease can prove fatal. Medications can al

Photos from Cure JM Foundation's post 01/09/2024

If you’ve attended one of our national Family Conferences, you’ve experienced first-hand the powerful connections made with other families and felt empowered by the latest knowledge from world-leading JM doctors.

We are thrilled to bring this experience to the regional and local level for all JM families nationwide in 2024.

These regional events will connect families with JM experts through our new series of educational events, family days, and regional conferences. Our progress starts at the local level!

Meet other Cure JM families at an upcoming Regional Conference or
Family Day in your area. Learn the latest in JM information and meet others who
share similar journeys and experiences.

Visit www.curejm.org/educationalfamilyevents for a full list of 2024 events and RSVP to secure your spot, as space is limited for each event.

01/08/2024

As the New Year opens, a hopeful horizon brightens for Cure JM. It is with gratitude to our Cure JM community for your extraordinary commitment to funding new research as we move into 2024. Celebrate the achievements with us as we review our community’s impact and our goals for the new year. 💙

Jim Minow, Executive Director, will share updates 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 share updates on the latest developments in physician education programs, family education and support programs, and our plans for family connections this year.

Register at https://us02web.zoom.us/meeting/register/tZ0qcumorjMuHdU-VRofwXdqIjkgQDhbNbeO

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.

Photos from Cure JM Foundation's post 01/03/2024

The Cure JM founding crew kicked off the New Year in Southern California, where it all began 21 years ago, with a charity Tennis and Pickleball Tournament in partnership with Global Genes

Compete 4 Cures is a festive and competitive event with all proceeds benefitting Cure JM’s mission of finding better treatments for JM while improving the lives of children and families affected by juvenile myositis.

Dozens of competitive and fun-loving tennis and pickleball enthusiasts joined the action to raise over $19,000 for Cure JM through raffles and a silent auction!

What a way to kickstart the New Year! We look forward to this event becoming a New Year’s Day staple and growing across our nationwide chapters. 💪🎾💙

For more info and support on bringing benefit events like this to your area visit www.curejm.org/diyfundraising

01/02/2024

With your generous support and participation in the Cure JM Holiday Challenge, our New Year is off to an incredible start!

Your outpouring of support has been nothing short of amazing, and we have an opportunity to carry that momentum into 2024 to do more to fund better treatments, improve care, and provide empowering education to our doctors and families.

For the 2nd year in a row, your powerful generosity has us knocking on the door of $1 million dollars raised in support of our 2024 mission!

We can’t thank you enough for your tireless dedication to our mission and JM families. We look forward to seeing what we accomplish together in this momentous new year. 💪💙

#2024

12/22/2023

Recently, our Executive Director Jim Minow shared a message of gratitude for all that our families, healthcare providers, researchers, board of directors, and staff have done during this season to advance our mission as we approach a new year.

Jim reflected on all that each of these powerful groups has done in 2023 and how we all work together to make leaps in our progress year after year.

To read Jim’s “Season of Gratitude” message, visit www.curejm.org/seasonofgratitude

As always, we are grateful for all of you and the tireless commitment you make to improving the lives of JM patients everywhere. 💙 🎈

From all of us at Cure JM Foundation, we wish you the best during this season, and we look forward to more progress in the new year.

12/18/2023

With your generous support and participation in our Giving Tuesday Holiday Challenge, our historic 20th year has been extraordinary ‼️

Your powerful support has been nothing short of amazing, and we have an opportunity to carry that momentum into 2024.

We’re excited to announce our year-end Founders’ Over The Top Challenge with a stretch goal of 1 million! Our Co-Founders, Tom and Shari Hume, have stepped forward with a new challenge in which they will match up to $25,000 raised now through December 31 st.

This is a huge opportunity to help ensure no promising research or critical programs are left behind in the new year. Thank you to all who have already participated in our holiday challenge. For those who are looking for an opportunity to participate and support during this season of hope, now is your chance ‼️

To make a gift hope, visit www.curejm.org/give or click the link in our bio. 💙

12/12/2023

As the cold winter months approach, there are a few things to remember when it comes to our JM warriors, especially those with photosensitivity.

Snow reflects the sun, amping up UV exposure. Therefore, the UV is hitting our kids from the sky and from down below where the snow is reflecting it off the ground. So, even in the cold months, sun protection is crucial.

Also, a cloudy day doesn’t mean UV rays aren’t present. 70% of UV rays still make their way through those clouds. Heat is not an indication of UV. UV is invisible, and you can’t feel it.

Higher altitude means more UV rays; think skiing on a mountaintop vs. a park in the valley. Altitude matters!
Remember, there’s no situation with zero UV.

So, in the winter months, don’t forget sunscreen, sunglasses, and hats. Let’s keep it cool, stay sun-safe, and slay the snow game with that SPF shield! ❄️💙

For more in-depth information check out the informative videos and articles on our website: https://www.curejm.org/sun-protection/

12/08/2023

🏋️‍♂️ Exercise in Juvenile Myositis: 6 Must-Know Tips for Parents! 🤸‍♀️

Here are some key takeaways from our exercise as a therapy in JM web resource…

1️⃣ It is safe at all stages: Exercise and stretching help even during active disease or remission.

2️⃣ It is vital for strength: Regular exercise can maximize independence and mobility. Muscles weaken fast, so keep them moving.

3️⃣ Exercise may slow the disease process: it can reduce inflammation, and support recovery and repair.

4️⃣ Find diverse routines: Consult a physical therapist for tailored exercise plans, including simple and complex exercises.

5️⃣ Guided progress: Work with a licensed therapist to ensure safe, effective home exercises.

6️⃣ Be their champion: Support and advocate for your child's exercise routine. Schools can assist, also, in the form of PT.
For more information, check out our latest article at https://www.curejm.org/exercise/

Empower your child through the power of exercise!

12/06/2023

Dr. Jessica Turnier, an esteemed researcher and clinician at the University of Michigan and member of the Cure JM Clinical Care Network, connects all the dots of our mission and how we all play a role in the progress we make.

Thank you, Dr. Turnier, for your commitment to making strides towards a future free of JM, and thank you to each of you who is a part of our Cure JM community.

You are truly the power behind our progress.

11/30/2023

Join our December 5th “Ask the Doc” town hall with our special guest, Dr. Lovell of Cincinnati Children’s Hospital addressing what labs mean and how they drive treatment plans in JM.

Topics Include:

How are lab outcomes measured? What do labs measure? When to worry? Daniel J. Lovell, MD, MPH, will help us understand what labs measure and we can use labs as a tool in our children’s care. He will also cover new and emerging tools that can be useful in determining the effectiveness of treatments.

Dr. Lovell is the Joseph E. Levinson Endowed Chair in Pediatric Rheumatology in the Division of Rheumatology at Cincinnati Children's Hospital Medical Center, where he treats children with juvenile myositis.

This presentation is brought to you by the Cure JM Clinical Care Network.

Register here to join or receive the recording. https://us02web.zoom.us/meeting/register/tZUocuyurD4iHNDSIIwMSl4W0WJjaSlZTjou #/registration

11/29/2023

Thank You for the outpouring of support on Giving Tuesday. You unleashed the power of generosity for progress. Your support made it the biggest day of Hope this year for Cure JM!

We are so incredibly grateful for you.

Your support continues to propel our life-changing mission through promising innovative JM research, new clinical trials for better treatments, and best-practice clinical care, all in pursuit of a cure for juvenile myositis.

Your support gives our JM kids, teens, and young adults a brighter future. We will continue to update you on our progress in the following weeks, with gifts still coming in!

Watch this message of gratitude from some of our JM kids.

11/28/2023

Today, Giving Tuesday is a day to unleash the power of global generosity and share the impact of our mission as we shape change for all affected by juvenile myositis.

We are honored to share our new short film, “Our Mission, Our Impact,” highlighting the core aspects of our mission, working together to make life-changing impacts for the patients and families we serve.

We’ve accomplished so much progress in 20 years together, and as a result, JM patients are doing much better today than ever. And now there is a new wave of progress in motion!

Please join us today in celebrating the impacts of our work on the lives of our patients, families, and the rare disease community by making a gift and sharing this short film with the world today! 💙💙

Thank you, for your powerful generosity and fighting with us for better. Let’s amplify our voices and our impact today! You can check our progress or make a gift today at www.curejm.org/give

11/27/2023

Tomorrow is the big day, Giving Tuesday 2023! In fact, it’s the biggest day of the year for Cure JM as we work tirelessly to improve the lives of all affected by juvenile myositis.

Together, we are driving life changing progress by improving clinical care, finding better treatment options (with less side effects), pioneering research, and providing empowering educational support to our families and physicians.

Your generous support ensures that no promising research or these critical programs are left behind.

Thank you for your unwavering support on our journey to a cure for JM. Let’s come together to make this a banner day of progress by reaching our fundraising goal on Giving Tuesday! 💙💙💙

You can help by making a gift today at www.curejm.org/give

11/23/2023

On this day of gratitude, we’re so thankful for YOU! We want to thank you not only today but every day that you show up to care about our kids. Happy Thanksgiving! 💙

Photos from Cure JM Foundation's post 11/20/2023

This weekend, JM Patient Advocate Anna Ramsey hosted her Giving Tuesday Holiday bake sale alongside family, friends, and community supporters.

Anna’s family has been doing these bake sales for years with neighborhood friends. The event has become a staple in their local community, and the support remains unwavering.

This creative, fun fundraiser raised $3,500 towards Cure JM’s mission, which directly impacts JM patients like Anna.

As a patient herself, Anna has always enjoyed being able to join the fight while adding value to the community. Bravo, Anna, and family!

Thank you for making a difference and sharing your journey. 💙

There is still time to join the fight for our Giving Tuesday Holiday Challenge. Learn more and join at www.curejm.org/hopehero

11/13/2023

Join us to hear from a panel of parents, patients, and grandparents who are participating in Cure JM's Giving Tuesday Holiday Challenge. 💙

Our panelists will answer:

- What is the Giving Tuesday Holiday Challenge fundraiser?
- What does it mean to participate?
- What is expected of me if I want to help?
- Why are we raising funds?

We will also have time for questions and discussion. This meeting is open to all.

Our Panelists Include:

- Anna Ramsey, age 26, chair of Cure JM's young adult patient Advocates Council who is participating in the fundraiser this year
- Leah Kania, a Cure JM mom who participates in the fundraiser
- Norah and Mark Sangid, Cure JM parents who will share how they participate and what works for their family
- Ryan King, Cure JM dad who will share how his family gets involved by holding "events" to raise funds for research

This will be a fun and open discussion. Anyone is welcome to pop in to listen, learn and share. 💙 to register click here https://us02web.zoom.us/meeting/register/tZYqfuGrrzorG9ZALAZ4nRgiIfAsKIuzn2n3

Questions? Contact Shannon Malloy, Director of Community Engagement, at [email protected]

11/09/2023

In a rare disease, it’s incredible how much progress can be made in 20 years. Reflecting on the state of juvenile myositis in 2003 vs. 2023 is powerful. 💙

We’re so thankful for all of the foundational work and dedication that has ushered in much better outcomes for JM kids, teens, and young adults today.

Our families are among the most dedicated anywhere. This is why Cure JM has made considerable strides in treatments, care, and support for all affected juvenile myositis.

Many of the medications and treatments that JM patients use today were made possible by the decades of work that Cure JM families, researchers, and clinicians.

These milestones are only made possible by the combined power of our families and community. Your participation and generosity truly make a difference in the lives of JM patients.

Thank you to all who are fueling our next wave of game-changing progress by participating in our Giving Tuesday fundraiser or generously donating to give gift of HOPE. 💙

Join the fight as a Giving Tuesday fundraiser or make a gift at www.curejm.org/hopehero or the link in our bio.


❤️

11/06/2023

As we continue our “Why We Fundraise” series during this season of HOPE, our Executive Director, Jim Minow, shares his perspective on the importance of our self-reliance and advocacy to win the fight against juvenile myositis.

“We are necessarily needing to be a little more self-reliant in our fundraising in order to achieve the same kind of outcomes that congress or the NIH or anybody is achieving with diseases that are far more known or far more common.”

As Jim always says, “If not us, then who?” This simple question resonates with us after 20 years of fight and progress that have been made by families and friends like you. Thank you for your tireless dedication and unwavering fight on behalf of all affected by JM.

To join the fight as a Giving Tuesday fundraiser or to make a gift, click here www.curejm.org/hopehero Every dollar counts in the fight against JM, and gifts are matched dollar for dollar in the month of November by the Coffey Family Match!

Thank you to all who have already joined our Giving Tuesday Holiday Challenge. Our work and progress aren't possible without you! 💪💙 We’re stronger together.

11/02/2023

As we’ve entered the fall season, we’d like to share some quick tips for families and patients who may be newer to their JM journeys.

A new diagnosis can come with an array of questions and emotions. Over the years, our families and JM warriors have shared their own experiences to help us create support resources to help others more easily navigate this new journey.

Know that you are not alone and that our community is as dedicated and supportive as they come. We’re a family of families with the common goal of supporting each other and sharing the progress being made for our JM kiddos.

Below are six mindful tips to help you navigate this path. Click here to read the full resource post https://www.curejm.org/best-practices-newly-diagnosed/

1) Build Your Medical Team: Find experienced physicians. Seek a second opinion if needed. Ensure pain management services are accessible.

2) Keep Detailed Records: Collect all notes and reports. Ask questions and write down answers. Maintain a current medication list.

3) Get Informed: Explore the Cure JM website. Understand your child's unique case. Know specific antibodies and treatment plans.

4) Seek Support: Trust your instincts as your child's advocate. Educate family and friends about your journey. Join Cure JM and our support community.

5) Inform Others as Necessary: Educate teachers and caregivers. Consider a 504 plan or IEP.

6) Self-Care Is Vital: Support your child emotionally and mentally. Join Cure JM's Mental and Emotional Support Group.

You are your child’s greatest advocate, and together, you will conquer this new journey. 💪💙

10/31/2023

We always love hearing the stories and motivating factors behind why our families are involved in fundraising.

We must say this John’s perspective below really resonates with us.

My family joined Cure JM’s Holiday Challenge because your work is being directed at a really critical need.

"The masses need help, but so do those in rare conditions like JM. Helping those who are in need where maybe they're not getting the attention they should be is a really compelling thing to be part of. As we were awakened to this notion with our own child being diagnosed, it made us passionate about what the masses won't go get; we need to go get."

Let's rally to have more families join this fight to ensure no promising research or potentially game changing treatments are left on the table this season.

Please join my family and others anytime between now and November 28th (Giving Tuesday) as a Hope Hero. Learn more or join at www.curejm.org/hopehero

We’re so thankful for all the families that make this work possible for our kids. Thank you for your unwavering dedication and support along this path of progress. 💪💙

10/27/2023

There is big news for the chronic inflammatory disease community!

You may have heard about yesterday's FDA ruling, which approved vamorolone as an alternative steroid for use in Duchenne muscular dystrophy.

Vamorolone is a steroid alternative with fewer side effects than prednisone. The drug aims to preserve the beneficial anti-inflammatory and muscle-strengthening characteristics of corticosteroids, while decreasing some of the unwelcome side effects, including bone fragility, delayed growth, and behavior changes.

Yesterday's ruling found vamorolone to be safe and effective as a therapy for Duchenne muscular dystrophy in its newly approved indication.

Vamorolone will need more study in juvenile myositis before most pediatric rheumatologists will be comfortable prescribing it for juvenile myositis.

"We remain urgently focused on working with the FDA and with the vamorolone developers to conduct a safety and efficacy trial in juvenile myositis. We are so grateful to Drs. Eric Hoffman and Kanneboyina Nagaraju of the Cure JM Medical Advisory Board for their dedication and fundamental research that led to the creation of vamorolone. Dr. Hoffman presented how vamorolone acts and why it is superior to prednisone in a September Town Hall presentation to Cure JM families," said Andrew Heaton, Ph.D., Chief Scientific Officer, Cure JM Foundation.

Cure JM Foundation's plan for a vamorolone clinical trial in juvenile myositis is now before the FDA. We are hopeful that yesterday's approval will help clear the path for accelerated testing of the drug in juvenile myositis.

Your support allowed Cure JM to provide crucial early funding to the developers of vamorolone. We are so grateful to have you by our side as we move this work forward, and we look forward to reporting back on the progress. 💙

Read the full announcement from our Executive Director, Jim Minow here https://conta.cc/40eicK0

10/26/2023

As we round out a historic 20th year and embark on our season of Hope, new research grants and exciting updates are plentiful!

We’re thrilled to share the next opportunity to hear firsthand the progress and impact being made in research by your support and fundraising.

Join us on November 2nd to hear about new treatments being studied for JM, including the drugs baricitinib, deucravacitinib, and vamorolone. Steve Rose, Ph.D. A former NIH researcher, Dr. Rose is the Co-Chair of Cure JM’s Research Committee. Steve will share updates on the latest in drug discovery for juvenile myositis, including new research grants for 2024.

Join us for the Zoom session by registering at this link. https://us02web.zoom.us/meeting/register/tZMtfuGtqTgrGtAEXAVi4LnBtB8Bd7ZK3gIc #/registration

10/24/2023

You are the power behind this progress, and we are so grateful.

With your help, we will see even more breakthroughs in the coming year. These milestones across 20 years are a result of the combined powers of family engagement and world-class collaboration between researchers and clinicians.

The Cure JM Foundation is proud to be the only organization dedicated exclusively to juvenile myositis care, support, and research.

We celebrate the fact that JM kids are doing better than ever before, but there is more work to be done to help JM kids, teens, and young adults live in a world free of juvenile myositis.

Help us continue the progress by joining our Giving Tuesday Holiday Challenge! Learn more and join us at www.curejm.org/hopehero

10/23/2023

Last week we shared an excerpt from JM mom, Julie Houpt on why she became and continues to be actively involved in Cure JM’s mission.

Today, we are excited to share with you the full video featuring JM parents and leaders on why getting involved in Cure JM’s Giving Tuesday Holiday Challenge is so important to improving care and finding better treatments for our JM kids, teens, and young adults.

Together, we’ve made so much progress for our kids to support their dreams and hopes of living their best lives. It truly takes a village and this continued progress wouldn’t be possible without you.

Please take a moment to watch and share this video. We are still in need of parents, grandparents, patients, and friends to join our fundraising efforts for our Giving Tuesday Holiday Challenge.

To join us and other families across the country, click the link in our bio or visit www.curejm.org/hopehero. Thank you for being the engine behind our progress!

Photos from Cure JM Foundation's post 10/19/2023

As our community continues to grow and our mission expands to improve care and support for our families, we’ve recognized the need for new resources on the Cure JM website.

Today, we’re excited to share the news that our website is now available in Spanish! This is an important step in continuing to support JM families everywhere.

To view the website in Spanish, simply click the “ES” button on the top navigation to the right of the “donate” button.

We appreciate your voice on the resources that we provide to JM patients and families. Please reach out with feedback on new resources that you’d like to see in the future! 💙 www.curejm.org

10/17/2023

Our season of “hope” is underway, and we love seeing families and friends across the nation join the fight against juvenile myositis.

There is no better time or way to get involved in our shared mission than joining our Giving Tuesday Holiday Challenge.

Watch this video message from a fellow dedicated JM parent, Julie Houpt, on why she has joined the fight as a Giving Tuesday Holiday Challenge fundraiser.

Thank you, Julie, for being a Hope Hero and so eloquently expressing the importance of your involvement.

To join Julie and other families nationwide, click the link in our bio or visit www.curejm.org/hopehero.

Together, we can continue to progress towards a world free of JM.

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Videos (show all)

Dr. Jessica Turnier, an esteemed researcher and clinician at the University of Michigan and member of the Cure JM Clinic...
Thank You for the outpouring of support on Giving Tuesday. You unleashed the power of generosity for progress. Your supp...
Today, Giving Tuesday is a day to unleash the power of global generosity and share the impact of our mission as we shape...
As we continue our “Why We Fundraise” series during this season of HOPE, our Executive Director, Jim Minow, shares his p...
Last week we shared an excerpt from JM mom, Julie Houpt on why she became and continues to be actively involved in Cure ...
Our season of “hope” is underway, and we love seeing families and friends across the nation join the fight against juven...
It’s National Myositis Awareness Day! Today, we are reminded of all of the progress made over the years for our JM warri...
We are excited to share that we have been adding new resources to our website with the latest information from our netwo...
Join us this weekend!It’s still “lemonade season,” and we’re thrilled to have JM warriors and families across the countr...
Families from across the nation joined forces to Walk Strong in Washington, D.C. There were over 30 states represented a...
National Walk Strong Day (July 2) is almost here! And we need your help to reach our goal walk to enhance care and advan...
It truly takes a family of families to make our work possible in continued progress for better treatments, care, and an ...

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