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.

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.

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.

Updates from Jim Minow

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