We know what’s it like. We’ve been there.

Who are we?

The AVM Foundation was established in 2004 by me, Nancy, and my husband, Brian. We’re two engineering professors at Virginia Tech with strong science backgrounds.

In February 2002, I was diagnosed with an AVM located in the occipital/parietal region of my brain. My AVM did not hemorrhage and has since been cured, but the AVM itself was a surprise (but very fortunate) discovery. In facing my own AVM diagnosis, we extensively researched the causes, epidemiology, treatment strategies, treatment successes, and overall management literature pertaining to AVMs through the medical literature.

Our interactions with the medical profession were extremely positive on average; however, I received significantly disparate treatment recommendations and predications about the impact of those treatment decisions. The doctors who gave these opinions were all giving their best opinion based on their professional experiences. Unfortunately, since AVMs are rare relative to many other brain disorders, doctor’s experiences can vary widely.

We put an effort forth to become as informed as we could so that, in partnership with my doctors, we could make as informed a decision as possible regarding treatment and lifestyle decisions. Given our professional training (and access to a Dorland’s Medical Dictionary!), we were able to use the medical literature to dissect the rationale behind each doctor’s opinion and apply our own life priorities to the issues associated with each treatment option.

I decided to pursue Gamma Knife (GK) radiosurgery in lieu of microsurgical resection (craniotomy) with embolization. Eighteen months after GK treatment, my AVM appears to have been cured.

We realize from personal experience that receiving an AVM diagnosis can be extremely frightening and traumatic. I know—I’ve been there. To help others facing a similar fate, we have invested funding, time, and educational training to put this Web site together. While still in its infancy, we hope that, with additional support from others, this site will grow into a useful resource for AVM patients around the world.

What do we do?

Our priorties are to

  • get useful information onto the Web site. We’re in the process of establishing a Technical Advisory Board of health care professionals to provide technical oversight and guidance to us and the Web site;

  • establish an AVM Foundation fellowship to support medical residents or medical researchers who are actively involved with studying AVM disease as part of their professional activities; and

  • be an advocate to the public sector and federal funding agencies on behalf of people with AVMs.

These activities take effort and resources. As a result, the AVM Foundation welcomes your donation or pledge of support.