Discussion Forum
A place for registered ACHA members to discuss issues with other members of the ACHA community and provide and receive support.

Jim Wong Memorial Fund

Jim Wong served as ACHA's Board Chair, led ACHA's first Research Committee, and served as long-time moderator for ACHA's on-line discussion forums.

Jim gave tirelessly to the congenital heart community, and was passionate about the potential for science and technology to improve the well-being of congenital heart patients. Donations to the Jim Wong Memorial Fund will go to support ACHA's efforts to use technology to create innovative approaches to promoting ACHD research and improving patient access to education, medical records, and peer support.

Past Board Member Spotlight

Jim Wong, PhD
ACHA was deeply saddened by the loss of Jim Wong on February 6, 2010. He was very committed to ACHA and gave tirelessly to the congenital heart community. Please visit his Memorial Page to learn more about Jim. Jim first became involved with ACHA when he led the team that organized the San Francisco Regional ACHA Conference in 2003. He was elected to the ACHA Board of Directors in 2004, and was later elected Vice President and then Board Chair in 2005. After a one year break, he re-joined the Board of Directors in 2008. Jim was also conditionally appointed to the NIH Director's Council of Public Representatives in 2008. In his professional life, Jim has held a variety of management and product/business development roles and is presently a Sr. Product Strategist at Hitachi Global Storage Technologies. Jim received his Bachelor of Science in chemistry summa cum laude from the University of California at Berkeley in 1977. He continued his education at UC Berkeley and received his PhD in chemistry in 1981.

The following remarks were given at Jim Wong’s Memorial Service on February 16, 2010 by ACHA President/CEO Amy Verstappen:

I am deeply honored to have been asked to say a few words about my dear friend and colleague, Jim Wong, and the legacy he built at the Adult Congenital Heart Association. Born with a malformed heart that could not provide his body enough oxygen, at five Jim became one of a pioneering new group of survivors – children receiving the world’s first surgeries for congenital heart defects. Told that his surgery had cured him, Jim’s heart was just fine until his middle years, when he started to have heart rhythm problems. He sought treatment from the “best” experts he could find, but none of them understood that his rhythm problems were just a symptom of something both very common and very serious for people with hearts like his. The same childhood surgery that had kept Jim alive had left his heart leaky and stretching. What he needed was a re-operation to fix his heart, and until he got it, he was at very high risk of death. And this is what nearly happened – he collapsed on a business trip in Singapore, and against all odds the cardiology team there not only saved him, but also were the first to note his heart size and refer him for specialized congenital heart care.

Heart surgery at the Mayo clinic followed, and when I met Jim, not long after, he was back to riding his bike to work and skiiing on the weekends. But his experiences had left him a changed man. Jim understood that what was unusual about his story was not that he had no idea he was at risk of future problems – this, unfortunately, is typical - or that he has received misguided care – this is also the rule, not the exception, for childhood heart patients when we grow up. What was unusual is that Jim had survived, and had survived with his wits and strength intact. From that time, he felt he had a moral obligation to both help others get the care he had almost been denied, and to help change the system so people did not have to depend on chance and luck to get the special care they need.

And this is what brought him to ACHA. Through our on-line forum, Jim started offering other patients thoughtful, sensible advice, and he became a dedicated ACHA volunteer. From the very beginning, Jim was extraordinarily giving of his time, and he unfailingly followed through with his commitments. He donated so much time, and was so patient and kind, that I spent the first few months or so after meeting him convinced that there must be a catch, and that any day he was either going to start to try to sell me something or pull out a bible and start trying to save my soul. But the more I knew him the more I realized that Jim was the real deal – a genuinely good, generous soul who was willing to selflessly help others with little regard for credit or pay-back. But this goodness and compassion did not come with sentimentality or show, but rather with a straight-forward, intelligent, practical outlook that ACHA desperately needed in these beginning, founding days.

Jim was the person who taught me how to create an excel spread sheet, formally review an employee, create a budget, and write a project proposal. When I stepped off the Board to become ACHA’s first paid CEO, he took over as Board Chair, and led us through the sometimes-difficult transition from a volunteer-driven kitchen table endeavor, to a professionally-run organization serious about making a major impact for all those born with heart defects.

Early on Jim became our message board moderator, a role which required him to read every one of the hundreds of messages posted at ACHA’s website, and he helped grow a forum that still provides support and life-saving advice to thousands of congenital heart patients a year. He then chaired our first Bay Area conference, and because of his connections and hard work, the event was both the best-attended and the least expensive ACHA regional conference ever. Jim’s IT expertise, and support from his friends at Hitachi, led to a web expansion which saw incoming ACHA membership rise from ten a month to fifty a week.

Passionate about science, Jim became ACHA’s first research chair, and his efforts built the way to ACHA’s first research funding from the National Institutes of Health. Jim then expanded his commitment to helping others, and in 2008 was chosen from hundreds of applicants to join the Council of Public Representatives at the National Institute of Health, where he represented the voice of the patient for all U.S citizens living with rare conditions. Those of us without Jim’s modesty and humility might have bragged about this position, since it is the highest-level community advisory position at the world’s most respected research institute. But not Jim – he just quietly fulfilled his commitments to the council, even after cancer was already robbing his strength.

Over the years Jim became not just my colleague, but a dear friend. Because he was a very private person, it took a while for me to learn how much he cared about his brother, sister, nieces and nephews, his beloved companion Yu-Sze, and her son Adam. But in the last few years we shared teen parenting stories, and he delighted in sending video links showing Adam winning swimming races. Despite his PhD in chemistry and his “Mr. Science” exterior, Jim had an artist’s soul. He loved music, books, and art, was an exceptionally talented photographer, and the beauty of nature touched him deeply. He also loved a good adventure, and good food, and ACHA road trips together meant I had a companion when seeking out the best local noodle dive or barbecue pit.

This is not how I expected it to end. Having outlived his blue childhood, and his Singapore near-miss, I certainly did not expect to be speaking at his service barely a year after he was diagnosed with thyroid cancer. I watched Jim bring the same practical, scientific brain to his cancer as he did to all his life challenges, and we spent hours discussing the exact specifications of the invading cells and the drugs that might kill them. We also talked about the reports now coming out noting increased cancer rates among congenital heart patients, and the speculation that we might be at high risk of cancer because of the high radiation associated with heart testing and treatments, particularly in the early era. The research scientist in Jim would be very offended if I did not make clear that these are just reports, and we do not yet have the research to confirm these initial observations. But ACHA has identified more research in this area as a priority, and when I went to talk with the National Institutes of Health this fall I brought this up, and I thought of Jim. We need to know if this risk is real, and if it is, then we need to start education and screening efforts to make sure that more congenital heart patients saved in childhood aren’t needlessly dying from cancers found too late to treat effectively.

We lost Jim much too young, and not at all how we expected. His presence and his efforts improved the lives of congenital heart patients throughout the country, and his legacy will live on long after today. My life has been deeply enriched by knowing such a special person, and I will miss him every day.