Updates from Jim Minow

Jim Minow brings more than 30 years of nonprofit experience in executive management and fundraising to Cure JM Foundation. He served as the Chief Development Officer at the Foundation Fighting Blindness from 2005 to 2014, where he created and implemented programs that doubled annual revenues to $35 million. This funding has supported clinical trials that actually restored vision to the blind.

There was a time when finding an actual cure for juvenile myositis seemed so very distant and aspirational. Not so today. JM doctors and researchers attending the ACR conference were awestruck by reports from Cure JM research partners on a therapy that has resulted in extraordinary improvement—and possibly long-term or complete remission—in myositis and juvenile myositis patients.

The therapy has a long name, but we know it as CAR-T for short.

A packed audience heard initial clinical trial results from Dr. David Chang, Medical Director of Cabaletta Bio. Cabaletta Bio is a Cure JM partner, and we will soon be enrolling eligible JM patients in trial locations across the country.

CAR-T therapy works by “resetting” a JM patient’s immune system, allowing reconstituted or “good” T-cells to better do their job in destroying or depleting the “bad” B cells that cause the autoimmune response.  Eight patients in the initial Cabaletta trial, including three myositis patients, had active refractory autoimmune disease and had discontinued all immunosuppressants prior to a single CAR-T infusion.

Jim Minow, New Chapter 2024, Executive Director

As we reflect on the past year, I’m reminded of the profound impact that your financial support of Cure JM has made in the lives of children affected by juvenile myositis. This cruel disease steals the carefree moments of childhood, like hugging a parent or playing with friends—things that most of us take for granted. Thanks to the support of people like you, children are now surviving this devastating diagnosis. But survival comes at a price—years of grueling treatments and difficult challenges that no child should endure.

One such child is James, who has been treated for JM for 17 years by Cure JM’s physician partners in his hometown of Washington, D.C. James recently shared his sadness that due to his treatments, he misses 24 school days each year. That is 24 days in the hospital, hooked up to an IV, receiving an infusion of a “healthy immune system” into his body. This infusion keeps his juvenile myositis in check, but it comes at the expense of James missing out on much of his childhood. James also endures weekly chemotherapy treatments and takes a handful of daily medications – each of which has harsh side effects—all to keep his disease at bay. Sadly, his story is not unique.

With the momentum coming out of our 20th anniversary, we are doubling down on our critical work to improve the lives of our patients.
 
I am asking for your support today. Your financial support will help us reach our goal of $150,000 to ensure a promising baricitinib clinical trial can start on time.
 
Researchers believe this new drug has great promise for juvenile myositis (JM). The team’s clinical trial plan for children and adolescents with JM is in place and has been approved by the FDA.
 
But the heartbreaking news is that this proposed clinical trial—for a drug that has already shown great promise as a new JM therapy—may not be able to move forward.We expected to hear promising news about the potential for CAR-T therapy to treat myositis at the Global Conference on Myositis (GCOM).
 

What we heard was more than promising—it was astounding.

We Can and Must Do Better for Our Children, Executive Director, Minow
With the momentum coming out of our 20th anniversary, we are doubling down on our critical work to improve the lives of our patients.
 
I am asking for your support today. Your financial support will help us reach our goal of $150,000 to ensure a promising baricitinib clinical trial can start on time.
 
Researchers believe this new drug has great promise for juvenile myositis (JM). The team’s clinical trial plan for children and adolescents with JM is in place and has been approved by the FDA.
 
But the heartbreaking news is that this proposed clinical trial—for a drug that has already shown great promise as a new JM therapy—may not be able to move forward.

Recently, Cure JM’s Jim Minow was able to attend the Global Conference for Myositis. This conference was not only informational, but was a most impressive day for Cure JM.  The conference brings together leading myositis researchers from around the world to share results and collaborate on future projects leading to better care and improved treatments for our JM kids. 

 Jim notes, “The influence and research leadership our ‘small but mighty’ organization brings to pediatric rheumatology never ceases to amaze me.  You, our parents, grandparents, and contributors have created the environment where JM research has flourished in recent years, frankly, because of your forward-looking and generous philanthropy.  At a global conference like this, it is incredibly rewarding to see the recognition afforded our truly brilliant research teams you have funded.”

It was so impressive to see Cure JM’s Advocates Council at work at today’s Rare Disease Day event at the National Institutes of Health. The audience received a real treat when our own James Best shared his lifetime journey in battling JM and presented a proclamation of thanks to Dr. Joni Rutter, who is the Director of the National Center for Advancing Translational Sciences (NCATS) and NIH.
 
What’s important to JM families everywhere is that Cure JM-funded research at NCATS has resulted in the identification of several drugs with strong potential to become new and better treatments for juvenile myositis. The next step is to complete the clinical trials that will prove these drugs are safe and effective.
Each January, I share with our community a few personal New Year’s resolutions for the year ahead. I believe these resolutions help us keep a keen focus on the priorities that matter most—better treatments, better care, and a cure for JM.
 
A few years ago, we pledged to identify new candidate drugs with fewer side effects so we could begin the process of testing those drugs for safety and efficacy in clinical trials. Over the past year, one of those clinical trials for the drug abatacept was completed at Cure JM’s Center of Excellence at George Washington University, and the drug showed effectiveness in treating juvenile myositis. Through our collaborative efforts, abatacept is now an available option in our growing number of JM treatments.
A few days ago, I shared with our Cure JM families an update that I was “Counting the Days.” I was counting the days because Cure JM can raise $1 million in our Annual Holiday Challenge.
 
I’m not counting any more, as today is December 31, the last day of the Challenge. The year-end response has been generous and heart-warming, and we are almost there. Three days ago, we had $150,000 to raise to reach the $1 million goal. Today, we need just over $50,000.
 
Reaching this goal is more important than ever, as moving forward with several game-changing research projects hangs in the balance.  
I am writing to wish you and your family the very best this Holiday Season. This time of year, especially, I am filled with deep appreciation for all that Cure JM families have accomplished to advance our mission, to improve the lives of children living with JM, and to support the doctors and researchers driving better treatments as we fight for a cure.
 
This is my Season of Gratitude.
Executive Director Update - Jim's Conference Round Up

Cure JM held its first post-COVID Family Conference earlier this summer. The conference was an extraordinary experience for families and leaders on so many levels, and I remain in awe of everything this organization has achieved because of the passion you bring to our mission.

I’ve often said that Cure JM is a unique “family of families,” and the importance of being on this JM journey together was never more evident than through the caring and sharing at the conference.  I was quite moved by the comment from the Medical Director of a pharmaceutical company in attendance when he said Cure JM was “by far the most family-involved community supporting its children” that his team has ever seen. High praise, indeed, and a validating independent observation as his company is planning a clinical trial for a new myositis therapy that may well include JM patients in the trial protocol.

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