As 2024 comes to a close, Cure VCP Disease is reflecting on the many incredible volunteers who have helped us progress toward our mission of finding a cure for VCP disease. Each individual who lends their time, skills, and heart to our cause brings us closer to a world free from this debilitating condition. One volunteer we are especially grateful for is Jan Reimer—a devoted wife, tireless advocate, and unwavering champion of the Cure VCP Disease community.
Jan’s journey began when her husband, Jim, was diagnosed with Inclusion Body Myopathy (IBM), a muscle-wasting disease associated with mutations in the VCP gene. At the time, Jan was deeply immersed in her corporate career and, by her own admission, didn’t fully grasp the challenges Jim faced day-to-day. “I was very involved in my corporate job prior to retiring,” Jan recalls. “So involved that I didn’t realize all the challenges my husband, Jim, faced with his IBM diagnosis.” However, as retirement granted her more time, she quickly focused on helping Jim adapt to his evolving condition.
Recognizing that every caregiver’s journey has a learning curve, Jan leaned on Cure VCP Disease’s educational resources and support network to find her footing.
"I was uncertain of my care-providing skills and the Cure VCP Disease community gave me the confidence and the educational assistance to partner with Jim for his health needs," Jan says.
Within this community, she found not only the knowledge she needed but also the understanding and encouragement to grow as an advocate.
Her dedication extends far beyond the home. This February, Cure VCP Disease hosted our VCP International Scientific Conference at Caltech —an event crucial to propelling research forward. Jan stepped up, assisting with details and tasks that ensured the conference ran seamlessly. Whether coordinating logistics behind the scenes, answering questions, or offering a helping hand wherever needed, Jan’s involvement was instrumental in making this gathering of researchers, clinicians, and advocates a success. The event fostered new scientific collaborations and further solidified our collective commitment to advancing cures, and Jan’s contributions were a cornerstone of that progress.
As we chart our course for the future, Jan’s impact continues to shine. Currently, she’s playing a significant role in transitioning our patient registry to a new, more robust platform—one that will better facilitate research collaborations and improve how we coordinate patient support and research. This registry upgrade is no small undertaking; it’s a challenging and often detail-intensive process. Yet, Jan approaches it with the same resolve and willingness to “get down and dirty” that she brings to every aspect of her volunteer work. She is unafraid of the complexity and remains focused on the ultimate goal: enabling faster breakthroughs and more targeted treatments.
Beyond her specific contributions, Jan represents what is best about the Cure VCP community—an alliance of individuals united by empathy, hope, and a shared determination to make tomorrow brighter than today. She speaks enthusiastically of her experiences: “What a tremendous blessing Cure VCP Disease has been to me. I’ve met so many courageous patients, caring significant others, and a staff of highly professional individuals that give more than their time—they give their hearts and souls to finding a cure for VCP disease.” In her words, we see the warmth and gratitude that define our volunteer force. It’s this collective passion, she believes, that “will lead to a brighter future for our affected population. I am so proud to be a part of the Cure VCP Disease community.”
Volunteers like Jan make everything we do at Cure VCP Disease possible. Their efforts have helped us reach milestones—like successful conferences, a robust patient registry, and an empowered patient community. They are, in many ways, the lifeblood of our organization. Jan’s story underscores that when individuals step forward, fueled by love, personal experience, and a yearning for progress, they can ignite meaningful change.
Your contribution, in any amount, honors Jan’s dedication and lifts up all the volunteers, patients, and families who rely on Cure VCP Disease.
Every donation moves us closer to finding a cure for VCP disease.
As we close out another year, we ask you to join us in celebrating Jan Reimer and all the volunteers who have dedicated themselves to this cause. Their hands-on involvement, compassionate spirit, and unwavering optimism ensure that we are moving forward—rooted in gratitude and growing towards a cure.