OMS Workshop, Abingdon England

Months ago our friends and family helped us remember Keira's 1st anniversary of being diagnosed with Cancer/OMS by raising awareness and making donations towards medical research.    We commemorated Keira's year-long fight with a hike in the mountains overlooking the Bay Area with 50 or so of our closest  friends (and those that also joined us in spirit).

One More Step Hike, October 9 2011

About 1 week ago,  I spent 3 days in the small town of Abingdon England, just on the outskirts of Oxford, with numerous doctors, scientists and a handful of parents who convened to discuss what is known about this disease, present what research exists to their peers, share treatment methodologies, and put forth a plan around what needs to be done to ensure that children with this rare disease have a better future.

Cosener's House, Abingdon England (w/ rare snowfall)

Your donations directly contributed to this OMS workshop in England and quite literally, without our donations this gathering would not have happened, and for that we THANK YOU for all of your love and support.

Even as advanced as our medical technology is, rare diseases do not present commercial markets suitable for the necessary investments in basic sciences to understand the nature of these diseases, let alone the investments in therapeutic research to find a cure.

Ensuring that this OMS conference happened was critical for a number of reasons:

1. Interest - It demonstrated that there is a set of clinicians and researchers who are genuinely interested in understanding and treating this disease.  There is no monetary gain or no glory in focusing on a rare disease.  You do it because you want to help kids get better.
2. Collaboration - It demonstrated that in order to fight a rare disease, you need the open collaboration and collective knowledge of an interdisciplinary group.  
3. Progress - It demonstrated that there is progress being made with this disease.  Although much still remains a mystery, new drug and evaluation protocols are being developed and new angles of research (like genomics) are being explored
4. Actions - There was a concrete set of actions that the medical and parent community is going to focus on as a result of this conference.  Actions that we aim to hold ourselves accountable for by establishing milestones that we collectively monitor over the course of the coming years.  

When Keira was first diagnosed, we were terrified about what little is known about this disease, and even more terrified that we would have to face this alone.  Having attended this conference, I was encouraged that we were in fact not alone and that there is a group (albeit small) of clinicians and researchers that are genuinely interested in focusing their time and resources on fighting this disease.  Over the coming months and years, Crystal and I hope to help drive this effort forward by collaborating with other parents to raise even more awareness and capital to fund specific research efforts that have been proposed.  And as we did before, we hope to solicit the help of our friends, family and extended community to come together and help in this effort.  More to come soon!