SonALAsense is conducting a clinical trial for our sonodynamic therapy (SDT) in diffuse intrinsic pontine glioma (DIPG), an incurable, pediatric brain tumor with few treatments. SonALAsense and others are working to change that.

One of our colleagues is My DIPG Navigator, a program of the ChadTough Defeat DIPG Foundation. We recently chatted with Leslie Jared, MSN, RN, who is the Director of Nurse Navigation for the organization.

Describe the nurses’ role at My DIPG Navigator.

The goal of the program is to educate, support and connect patients and families who have been diagnosed with DIPG or Diffuse Midline Glioma (DMG). We have four Nurse Navigators. Families are referred to us by physicians, other families, or through our web site. A patient or family can register for the program at https://www.mydipgnavigator.com. We initially follow-up with an email and a phone call and spend an hour or longer with the family during the initial interaction.

We obtain a thorough medical history and listen to the direction of treatment the parents want for their children.

Radiation therapy is the only standard of care approved for DIPG. Clinical trials are the only other option for treatment after radiation therapy. The number of clinical trials for DIPG have increased over the last 3-4 years along with new treatment modalities.

The connection piece is important. We have developed and continue to develop relationships with DIPG experts across the United States. The rarity of the disease means that experts are not available everywhere. One new avenue to help with this is the DIPG DMG National Tumor Board. This tumor board is staffed with several physician experts from all over the United States. They meet every other week to review patients and provide input to potential treatment options.

These meetings are tremendous opportunities for our families. Even if they don’t live near a major pediatric medical center, they still have access to that kind of expertise.

Describe your work with SonALAsense.

SonALAsense is in the process of developing a new treatment modality for DIPG. The Nurse Navigators at My DIPG Navigator will provide information to families regarding the SonALAsense clinical trial if there is a current open slot for enrollment.