Children diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a tumor located in the brainstem, have a 0 percent chance of survival. After diagnosis, children survive two to 12 months with this rarest and worst form of pediatric brain tumors. Approximately 200 children in the United States, 40 children in the United Kingdom, and 18 in the Netherlands are diagnosed with DIPG each year. IBM Netherlands Software Sales Manager John Emmerik’s son, Semmy, was diagnosed with DIPG on July 19, 2006. He died 11 months later, at the age of five.
"It cannot be true that in these times when we can fly to the moon and do whatever we want, that we cannot heal children of such a horrible disease,” John says. “We knew and felt we needed to do something about this disease, as if we wouldn’t do it, nobody would do it."
John and his ex-wife, Nicole Bakker, established Stichting Semmy, or the Semmy Foundation, four months after Semmy died, to help other parents, provide them with all kinds of information, and push to find a treatment for DIPG. They built a web site, and when they heard of another boy with DIPG in 2008, rushed to get as much information as possible on the site to aid the boy’s parents.
IBM Netherlands volunteer works for pediatric cancer cure.
Pediatric cancer itself is a very rare disease, of which there is little known. Brainstem tumors are rarer still, meaning there is extremely limited knowledge – all specialists worldwide see only one or two DIPG patients a year. John hoped that through Stichting Semmy, specialists would be able to unite their research and information about their patients, and come up with a treatment protocol for DIPG patients – and one day, a cure.
Beginning the fight
In 2008, the foundation held its first Run4Semmy, a fundraiser. Nearly 100 people participated. The event grew, and the last Run4Semmy had more than 470 participants, who raised more than US$100,000.
In January 2011, Stichting Semmy was able to fund a meeting organized by the Free University Medical Center (VUMC) in Amsterdam of various European specialists and professors in the field of brainstem tumors. One of the results of the event was the establishment of a European collaboration platform to share and analyze research data. A treatment protocol was established, something that had not happened before Stichting Semmy was created. Specialists all around the world now ask advice from the team of specialists brought together by the VUMC.
During IBM’s Centennial Celebration of Service, Stichting Semmy received an IBM Catalyst Grant to help fund the establishment of a central research collaboration cloud for the exchange of data on DIPG at the VUMC, and start a pilot to enable an approach that reflects IBM’s Smarter Healthcare strategy. The cloud will beenriched with an IBM content management offering asset from the IBM Haifa Research Lab. A team of IBM volunteers will deploy, install and train users on the content management offering asset.
In March, 2012, John provided a progress report, "VUMC has just opened a clinical study, based on the findings of the research so far. This uniqueness of this clinical study is that it is a complete “treatment protocol” and not just used to test the effectiveness of one single drug."
With the help of the IBM grant and IBM volunteers intelligently bringing data together, new knowledge on pediatric brainstem cancer can be used by a group of collaborating healthcare institutions – for the first time. And that, John hopes, will one day lead to a cure for the rare disease that took his son from him.
"I'd rather not have had to do this, and just try to go on with my life again," John says. "Every week we receive messages of children who were just diagnosed, who are getting worse, or have passed away. These messages are always a shock and difficult to handle. But if you see all those people who rely on us and are happy and thankful that Stichting Semmy exists, we know why we do this and why we need to continue this battle."