We are four cyclists -- Naveen, Crystal, Gautham and Brian, parents and good friends -- who have come together to raise awareness and research dollars for OMS, a rare, debilitating autoimmune disease brought on by a childhood cancer known as Neuroblastoma. You read that right: first you get cancer and then you get OMS. This is such a rare and heartbreaking diagnosis, it simply defies comprehension. And when you learn that no one is researching this, no one specializes in this, that there is no established treatment, and you realize that all the modern day medical science we have grown to expect in the developed world can’t help your child, you feel helpless and alone in the fight. We aim to change this by funding research and growing awarenss for OMS.
At 18 months of age, Crystal and Naveen’s daughter Keira started having difficulty walking, controlling her movements, and sleeping. Within 5 days, she went from being a happy toddler to completely debilitated -- no longer able to walk, stand, sit, talk, or even sleep. Within 9 days doctors at Lucile Packard Children's Hospital at Stanford had diagnosed her with Neuroblastoma/OMS.
Keira had two battles ahead of her: surgery to resect the tumor, and the lifelong fight against an invisible disease that had stripped her of all her abilities. While doctors believed that tumor resection would address the Neuroblastoma, they had no guidance on if or when Keira would regain her abilities.
Keira started with potent immunosuppressive therapy to blunt her immune system (and hence the effects of OMS). She also began intensive Physical, Occupational, and Speech Therapy. Keira has endured countless treatments, infusions, a daily medication regimen, needle pokes, blood draws, tests and scans and did so with courage, determination, and even smiles. For nearly three years, Keira battled back from not even being able to sit without assistance, to crawling, standing, walking, running, jumping, climbing, and now is a hard-charging 4-year old. And while Keira is doing well today, she is still on treatment and relapses are a constant worry - even the common cold could activate OMS. We ride for Keira and other children that battle OMS.
OMS is an orphan disease. Only 1 in 10 million children are diagnosed with it each year. There is no center of excellence, no established treatment protocol. No one knows precisely why it is triggered or how it manifests itself because even the most basic research has not been done.
We want to raise money to issue the the first ever, publicly funded, scientifically reviewed OMS research grant by the spring of 2014.
While OMS is a rare disease, it has several interesting characteristics, namely the fact that at it’s core is an immune response against cancer. Unfortunately the immune response cross-reacts with healthy nervous tissue, but if the mechanisms of OMS could be understood, it also holds the potential to unlock other insights which could help in better understanding of Neuroblastoma, other cancers, and also other autoimmune disorders.
After Naveen rode in Pablove Across America (PAA) last year and raised $30K for OMS, we were truly amazed and grateful for everyone’s support. However, as we learned, for a meaningful research study to be conducted, more funding was needed to attract a competitive pool of research proposals, both in terms of quantity and scientific scope. Further, we need to better engage with the fragmented OMS research community to educate them on the availability of these funds and advocate for research proposals to be submitted.
By the end of 2013 we would like to have ~$100K in Pablove’s OMS fund, which will allow us to issue a $50K grant in the spring of 2014 but also attract proposals that are larger in scope given that we will have another $50k in reserves (which means an opportunity for researchers to extend their initial grant if their studies yield positive results).
We are currently sitting just under $50K right now, which is why Team V formed to ride in PAA 2013 to raise an additional $40K. This will close the gap to the initial $50K and also get us on a trajectory towards the $100K goal, while also building awareness of our efforts and funds to the research community.