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