Reflections from Birmingham: Building Bridges of Support for ISM Patients:

An inside look at the seminar through the experience of TMS staff member Vlai Ly

March 22nd, 2025, was the Building Bridges of Support and Understanding for Patients and Family seminar in Birmingham, Alabama. This was a free seminar where ISM patients, their families, and friends could hear from ISM experts such as Dr. Vacchani, Dr. CaJacob, Dr. Kurtin, and Jessica Fraser.

Attendees gained valuable insights on a range of topics, including symptom management, building a care team, treatment options, enrolling in clinical trials, and the resources available from TMS. If you were unable to attend in person or online, the videos are currently being edited and will be uploaded to the TMS webinar library in the coming months!

I attended the event as a staff member and exhibitor for The Mast Cell Disease Society, and at the end of the day, I felt the incredible impact the seminar had on ISM patients and everyone who shared that space.

For ISM patients, it can take six to eight years to receive an accurate diagnosis from their healthcare professionals. This period can be extremely lonely, frustrating, and heartbreaking for many patients. This sentiment was deeply felt in the seminar room as patients shared their diagnostic journeys, journeys that had brought them to the brink of giving up. Despite the immense challenges they had faced, a deeper sentiment arose throughout the event: hope and self-empowerment.

I want to share some quotes I wrote down from the event, quotes that I found to be so important and that speak to the transformative power of the seminar:

“We have to educate ourselves so we can help ourselves.”

“Support systems and communities are helpful.”

“Be an advocate for yourself. Find the right care team, and don’t give up.”

“We can all connect and help each other.”

The long and difficult journey of being an ISM patient brought everyone together that day, and it was through the seminar that they felt heard, seen, connected, and no longer alone in their fight for a healthier wellbeing. When the event ended, everyone felt a renewed strength. The shared experience created a community and a network of support that all of us will carry with us as we continue to support patients with mast cell diseases towards a better and healthier life.