|
Dear Cure JM Families and Friends,
I like to kick off each New Year with a set of personal resolutions to achieve in the coming year. Here are my three most important resolutions I’ll be working to keep for 2025.
Happy New Year. I believe it will be one of Cure JM’s best ever!
Resolution #1 Better treatments: Positive results from one additional clinical trial
As you may know, the clinical trial for the use of the drug abatacept (Orencia) in JM was completed in 2023 at the Cure JM Center of Excellence at George Washington University. Children and adolescents with moderate disease activity had significant improvements in muscle strength, physical function, endurance, and skin rash, along with lowered levels of muscle inflammation. The study was conducted by Dr. Rodolfo Curiel, director of the Cure JM Center of Excellence.
“This is a breakthrough for juvenile myositis,” noted Dr. Lisa Rider, long-time chair of the Cure JM Medical Advisory Board who was also a study investigator. “The majority of these patients improved at least moderately.”
I mention this clinical trial success as identifying and proving the effectiveness of newer drugs was a 2024 resolution. We are equally committed to funding and supporting clinical trials in 2025, and so Resolution #1 is to complete at least one additional trial in 2025.
We have some good candidates, notably drugs that inhibit the overexpression of certain proteins that lead to muscle, skin, and organ inflammation. These are drugs such as deucravacitinib (clinical trial conducted by Dr. Andy Mammen, Johns Hopkins University), brepocitinib (clinical trial various locations), and baricitinib (initial trial conducted by Dr. Hanna Kim at NIH; successor trial at Hospital of Paris).
Other clinical trials include Cure JM’s partnership with Cabaletta Bio to determine the safety and effectiveness of CAR-T therapy in JM.
Clinical Trials can take time (often many years), yet resolution #1 is for at least one of these current trials to be completed in 2025 with assessed results by the end of the year.
Resolution #2: Increase the number of doctors with expertise in JM care
We’ve made great progress here. Cure JM’s Clinical Care Network has grown to encompass 36 leading children’s hospitals in the U.S. and abroad and includes some 58 experienced physicians. There is much remaining to be done, however, as there are still areas of the country with few or no pediatric rheumatologists and certainly none with JM expertise.
We have added a robust fellowship (e.g., training) program to our grant budget this year. Resolution #2 is to add 10 new children’s hospitals to the Clinical Care Network with financial support provided to their doctors to further increase their medical expertise in JM care.
Resolution #3: Increase Cure JM’s grant budget and the number of new grants we can provide in 2025-2026
It’s really pretty simple: research = progress toward better treatments and a cure. We simply would not have the better treatment options and the quality of care we have for our children today if there were no Cure JM. I don’t want to leave any stone unturned.
Cure JM’s current grant obligations total $3.3 million. With the advent of emerging opportunities for more clinical trial support in the 2025 grant cycle, I expect that our grant obligations could well increase by $700,000 to $4 million or more.
$4 million in JM grant obligations would be quite a milestone. Resolution #3 is to seek and identify 3-4 additional new grants, including clinical trial grants, in the 2025 grant cycle and to find the additional financial resources necessary to fund them.
Allow me to close by thanking you for your leadership and support of our Holiday Challenge and Walk Strong campaigns. I’m looking forward to 2025, full of notable research and clinical care advancements.
Best wishes for a healthy and prosperous New Year.
| 
