Why We Ride
On October 2 2016, we will begin our 600 mile bike journey from Oakland to LA. On October 2 2011, our daughter Keira, at 18 months old, began her journey as a cancer patient, being diagnosed with a frighteningly rare cancer (Neuroblastoma) and autoimmune (OMS) diagnosis that had nearly crippled her. This began her long and arduous journey, first to treat the cancer but then combat the autoimmune disease that it had triggered, which was attacking her brain and central nervous system. Now at 7 years of age now Keira has endured more adversity than most of us will in a lifetime. And while she's doing relatively well, OMS is still very much a persistent part of our lives as we constantly surveil for symptoms, balancing on the edge of normalcy and signs of relapse, treating aggressively and managing the risks and side-effects of treatment.
While our journey pales in comparison, on October 2, we will our Pablove Across America bike ride to raise awareness and money to fund badly needed research for OMS and Neuroblastoma. We ride for Keira and her ongoing battle to just be a kid, for her little sister Akemi who bravely and compassionately stands by Keira’s side, for all the children with OMS and their families that walk this uncertain path, for the parents who fight tirelessly with insurance companies who deny treatment and conveniently hide behind ‘lack of evidence’ as their excuse, and for the few researchers in this world willing to try and build a body of knowledge around a disease that won’t fetch any headlines and won’t fetch massive attention for their institutions.
What is OMS?
Opsoclonus Myoclonus Syndrome (OMS) is a neurological autoimmune disease similar to MS that is triggered by Neuroblastoma (cancer of the nervous system). It affects 1-in-10-million children, it is extremely rare and designated by the NIH as an ‘orphaned disease’. Some children have significant physical and cognitive deficits, requiring special assistance throughout their lives, other children do relatively well, and yet others live normal lives but in the blink of an eye can suffer from massive relapses years after seeing any symptoms. Keira has teetered between doing relatively well but has had 2-3 relapses a year which require aggressive immunosuppressive treatments to try and limit neurological damage. We know very little about this disease, which is why we desperately need to fund research.
What’s being done
When Keira was diagnosed, there was no active research in OMS. Since then, through the support from our community and he Pablove Foundation, we have funded 4 OMS research grants and renewed 3 of them. These projects are focusing on using different methods to find the elusive antibodies or biomarkers linked to OMS, which would help with better diagnosis, insurance claims, and more targeted treatment development. But there are always more promising ideas that need attention and early stage research could unlock more questions than answers. Which is why we continue to ride to raise money for ongoing research.
OMS Research is Important for 3 Reasons:
OMS is a complicated disease, but here’s a reminder of why research matters:
(1) Understanding which antibodies are attacking which targets in the body will be life-changing for the diagnosing and treating OMS. This can help kids and families within their lifetime
(2) Early research insights could help shape future studies. Given how little OMS has been studied, early findings could reveal new directions and leads for future researchers to follow.
(3) Understanding the mechanism driving OMS could ultimately lead to breakthroughs in diagnosing and fighting the cancer that triggered it, an area of cancer research that is receiving a lot of interest right now.
Forever Grateful
For all of our supporters and donors, friends, family, colleagues, fellow hikers and riders we’ve met along our journey, thank you. Your support alone is what has gotten us this far. Unlike other diseases, that receive funding from the government and pharma companies, OMS and other rare diseases get nothing.
Thank you for getting us this far and as we ramp up again, we would be forever grateful for your support (and 100% of it goes directly to research)!