Cure JM Foundation 2018 National Family Conference Recap

Executive Director Review

Jim Minow at the 2018 National ConferenceA Unity of Purpose

I am very much in awe of Cure JM families. Every year, when we gather for our annual Family Conference, I am reminded of your extraordinary commitment and how much you do to move our mission forward.

The Family Conference represents a unity of purpose that is our greatest strength, and the extraordinary progress we make is a result of engaged volunteers and leaders, families and patients, physicians and researchers.  
The Conference is a three-day snapshot of that critical engagement. But In fact, your work, and the work of the board, Cure JM Chapters, volunteer fundraisers, and Cure JM leaders takes places in communities from coast-to-coast every day of the year. I know we will prevail in our crusade against this cruel disease because of the dogged determination each of you bring to the fight against JM.
And we have made progress. Today we understand more about how to effectively treat JM that we ever did before. The discovery of myositis specific antibodies, for example, can help us predict response and lead to more precise treatments. New compounds now in clinical trials, such as the steroid replacement vamorolone, represent promising new treatments without the side effects. Clinician education program have led to a significant decrease in time to diagnosis, resulting in earlier intervention.

Of course, we have much to do: Understanding the complicated genetics of JM will lead us to one to alter or “edit” genes and get to the cause of JM. Supporting world-class physicians and to assure more access to high-quality care, in more geographic locations, must be a priority. 
It will take everyone’s participation to drive us towards greater progress. And progress is possible. We are living in times of significant scientific advancement. The field of genetic research alone holds great promise for the lives of people living with JM. As a community, we must harness this potential advancement for the benefit of those living with JM.

Strategic Priorities

The Conference also provides the opportunity to share Cure JM’s Strategic Research Priorities, which serve as our “Roadmap to a Cure.” These priorities fall into four broad areas of research:  Accelerating Scientific Discovery (basic research to better understand the causes of JM); Expediting Development of Treatments (improved therapies delivered to patients); Providing Access to Quality Care; and Fostering Collaboration (sharing knowledge, data, and resources to speed research advances and improve clinical care).

These priorities are Cure JM’s guide to the future, and families at the Conference were able to see them in action in the reports and presentations from clinicians and researchers made over two days.Please review the Informational Sessions to view some of these presentations.

With Appreciation

Cure JM’s mission to serve our families, children, teens and young adults was evident at the 2018 Conference in so many inspirational ways. There are simply too many people to thank to do an adequate job of it here, but I feel I must recognize a few.

I’d like to start with the Board of Directors and especially Kristine Alderfer for her leadership as Conference Chair, and Mitali Dave for her oversight of the Medical Conference. Without the determination and focused vision of the board, Cure JM would not exist o serve our families.
Thanks are due to the Medical Advisory Board, many of whom presented at the conference and who represent the foremost clinical experts on JM in the world. To have MAB as a resource to our families is invaluable.
And, of course thanks to the many volunteers and sponsors who make the conference sessions, Walk Strong, and so many other aspects of the conference successful. Our Unity of Purpose illuminates the path forward—the Roadmap to a Cure.

Watch my remarks about the State of Cure JM below:


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