Cure JM Clinical Care Network Launches
At Cure JM's annual Medical Symposium in March, board of directors president Kristine Alderfer announced the launch of the Cure JM Clinical Care Network. The creation of the Clinical Care Network is a huge step forward as we work to increase the quality of JM care and access to that care in all corners of the country and beyond. The doctors and their respective children's hospitals who comprise the network are dedicated through their training and experience to exemplary JM care, and the Network includes world-class leaders from Cure JM's Medical Advisory Board and other doctors from the U.S., Canada, and the United Kingdom, all of whom are known to Cure JM families.
Members of the Clinical Care Network are eligible for additional grants from Cure JM to further advance quality care. I would also like to thank the Cure JM family liaisons for their volunteer work to help us strengthen our partnership with each medical provider, and to the Cure JM board of directors for its support and vision to create a program of such magnitude.
To learn more about the Clinical Care Network and a list of members and family liaisons, click here
. A second round of nominations to the Network will take place in May, so expect to see additional members in the near future.
Abatacept Trial Near Completion
Another clinical trial in Juvenile Myosotis for the drug abatacept (the trade name is Orencia) is wrapping up at the Cure JM Center of Excellence at George Washington University. The research leaders for this trial are Dr. Rodolfo Curiel, Center Director, and Dr. Lisa Rider of NIH, who also serves as chair of the Cure JM Medical Advisory Board.
At present, the GW team is analyzing the data on abatacept's effectiveness in treating JM children age seven and older. Dr. Rider plans to detail the results of the trial in her presentation to the Global Conference on Myositis being held this June in Prague. Based on the information I have to date, there is early reason to be optimistic about the drug's effectiveness. We will know for sure when the trial data is complete, and I will share that with you at the earliest possible date, so stay tuned!
Cure JM Chapters Reconvening
As I'm sure you are aware, in 2020 all in-person Cure JM meetings including our annual Family Conference and chapter meetings were suspended at the outset of the COVID-19 pandemic. Cure JM moved into virtual mode. Most importantly, we worked closely with our Medical Advisory Board, the CDC, and immunology specialists from NIH and elsewhere to bring you the very best advice available on protecting and vaccinating your immunocompromised child or grandchild as well as yourself, a caregiving parent or grandparent.
As the COVID-era is hopefully behind us, I would like to thank our doctors and medical community for their sage advice and ability to carry on and provide in-person care, such as infusions, when needed, or to provide high-quality telemedicine visits as a temporary alternative to keep your children and grandchildren safe. I know this was a difficult period for our families to navigate.
We've polled our leadership, and with schools back in session and a general return to "normal" life, the consensus is that we can carefully begin again to meet in person. Five or six of our chapters will be meeting in person this spring and early summer, and I could not be more excited for our families to reconnect and engage directly with our doctors in their communities. Another group of chapters will be organizing over the summer, and if you would like additional information about the status of the Cure JM chapter in your region, please reach out to Betsy Leon at Betsy.Leon@CureJM.org.