Such a response shows an incredible level of commitment to finding answers as to why our children contract the illness and what we as a society can do to prevent the continuation of the 50% surge in child/teen cancer since 1975.
Our effort honors the courage and lives of our children. And for those among us who suffered cancer as children or teenagers and are now taking part as adults, their bravery is especially inspiring.
Dr. Michael Scheurer’s team at Baylor – which is the world’s largest biomedical research complex and observes full statutory data privacy and security protocols – is contacting everybody in waves as they ramp up their dedicated resources.
Baylor are reaching out in waves because even they are learning as they go. Such an online study has not been attempted before, and this means they need constantly to obtain approvals of new protocols. That takes time.
For example, those of us who have a child who is deceased have not yet been contacted, because the questions and consents are slightly different. Dr. Scheurer expects to secure the final approvals for us from their Internal Review Board this week.
Also, Baylor will likely reach out to families outside the US only after Baylor have obtained the approval of protocols relating to the collection of clinical samples (saliva tests and baby teeth).
Meanwhile, please watch out for your Baylor email and do share information on the study with other affected families – perhaps by forwarding this email.
We are working alongside several groups now, ranging from Momcology (which offers a remarkable range of primary caregiver support services and is led by Kim Buff) to the Coalition Against Childhood Cancer and environmental health organizations such as the Southwest Pennsylvania Environmental Health Project (see our blog on fracking) and much larger entities, like the Natural Resources Defense Council.
Meanwhile, we are preparing to expand our scientific advisory board and will announce details soon. One of the world’s top experts on the causes of leukemia has already agreed to join.
And finally – to show our gratitude to all the families who complete TheReasonsWhy.Us study, we are preparing to roll out a modest gesture of appreciation that celebrates our children and Planet Earth. More details soon!