Could OMS unlock secrets to new cancer treatments? Many of you will recall Keira’s original Neuroblastoma/OMS diagnosis -- cancer and autoimmune disease.  The Neuroblastoma had for some reason triggered her immune system to respond, which in turn cross-reacted with her nervous system to cause the autoimmunity of OMS.  Why is this interesting? Cancer typically evades the immune system because cancer cells are you own In OMS, cancer does trigger an immune response, but not known why Neuroblastoma in OMS cases tend to have a good prognosis; believed to be due to the immune response against the cancer.   Neuroblastoma is discovered in about 50%-60% of OMS cases. In the cases where they don't find a Neuroblastoma, many researchers now believe that it once existed and the immune response led to the cancer regression -- which is miraculous!  In this article from the Institute of Cancer Research, Dr. Louis Chesler discusses how understanding the mechanisms at play with OMS could one day lead to developments in cancer immunotherapy, an emerging form of treatment where drugs utilize the bodies immune system to fight cancer. This is yet another reason why research for OMS is important. It can help Keira and kids afflicted with OMS but also provide insights that could lead to treatments for a broad array of cancers. If you've already made a donation, THANK YOU for your support. If you haven't please consider doing so (100% of your donations will go directly to fund research). Donate to Crystal $3K More Needed Donate to Naveen $11K More Needed Thanks! Crystal, Keira, Akemi and Naveen

Why is Naveen riding his bike 700 miles?!

700 Miles In A Week!

This fall I’ll be riding my bike 700 miles from Austin to New Orleans with the Pablove Foundation to raise money for pediatric cancer research.  As most of you know this ride is personal as 3+ years ago our 18-month old daughter Keira was diagnosed with an extremely rare cancer (Neuroblastoma) + autoimmune (OMS) diagnosis.  She’s battled through cancer but continues to battle the OMS that came with it.

2/3 Young Cancer Survivors Face Secondary Disorders

In the last 20 years, only two new drugs have been developed childhood cancers and <4% of the National Cancer Institute's budget is directed to childhood cancer research.  That’s for all kids cancers, and doesn’t even touch the myriad of secondary disorders and issues that 2/3 young cancer survivors deal with, OMS being just one of the rarest of these.

OMS, The Disease You Never Heard Of

OMS is a neurological autoimmune disease that affects motor, cognitive, and behavioral development and was triggered by cancer.  What’s miraculous about it though is that at it’s core, the body detected and mounted an immune response to cancer (which typically evades the immune system).  The unfortunate side-effect was that it also triggered an autoimmune disease.  But understanding this mechanism could not only help kids w/ OMS, but also shed light on how a broad array of cancers could be treated in the future.

What We're Doing About It

There is virtually no research on the subject. However, last year, through your support we funded TWO seed grants specifically for OMS, virtually unheard of for a disease this rare.  Which is why I continue to pedal away.  With your help we can sustain and diversify our research, potentially unlock insights behind the immunity and cancer, and help kids within their lifetimes. 

Thanks for reading, considering and if you do decide to support, please see the steps below (100% of donations go directly to research):

Step 1 - Donate http://stayclassy.org/nv 

• Click on the PINK donate button

• Choose to make your donation public or anonymous

If you're interested in learning more about our work, the research grants or the Pablove Foundation, click here for more info.  

Thanks! 

A note from the pablove foundation... Two is way better than one.

As you know, your generous support allowed The Pablove Foundation and the Viswanatha family to reach a major milestone in 2014. We funded not one, but two groundbreaking research projects that will help us find answers for Opsoclonus Myoclonus Syndrome and its connection to the childhood cancer neuroblastoma. The Viswanathas are like family to all of us at The Pablove Foundation, and making progress against OMS is a cause that is is very close to our hearts. As an "orphan" disease, OMS receives close to no funding or attention unless people like you and me get involved. The autoimmune disease attacks a child's neurological system, resulting in severe motor, cognitive, and behavioral complications. That's why we are so proud to have you by our side to fund two incredible initiatives to uncover answers! Our Scientific Advisory Committee chair (and head of oncology at Children's Hospital Los Angeles), Dr. Leo Mascarenhas, is a rockstar at explaining our scientific research grants. Here are two highlights from this summer's announcement that explain the projects we funded with your support: 11:03 - "Dr. Bethen Lang [of Oxford University] is going to use mass spectrometry, which is a technique to isolate [OMS] specific antigens. Antigens are things which cause the body to respond against them in [children with OMS]. So if we find a way of blocking antibodies from finding those [OMS] antigens, those antibodies won't attack the brain and won't attack the eyes and make them do these bizarre things." 11:40 - "Dr. Gregory Owens [of the University of Colorado Denver] is taking this one step further. [OMS] is caused by antibodies, which go and attack the brain and the spinal column and the eyes. And what makes antibodies are b-cells. So he has collaborated with a scientist who has collected spinal fluid from around the brain and is going to assess these antibodies in the fluid and then find ways in which he can stop the b-cells from producing these antibodies." Watch Dr. Leo Mascarenhas deliver the full report on the OMS Grants we funded in 2014 Thank you for helping us mark this milestone with the Viswanatha family. Because of your generous support, we are funding progress and fighting childhood cancer with love. with gratitude + pablove,  Megan McMillan Community Affairs Director  The Pablove Foundation  p.s. Read up on all six of the Childhood Cancer Research Grants that we awarded this year on the Pablove Blog.  p.p.s. Crystal and Naveen are riding Pablove Across America again this year! I can't wait to cheer for them at the finish line in New Orleans. Go Team V!

Mid-Autumn Moon Festival

In celebration of the Mid-Autumn Moon Festival the girls and I made bunny lanterns after school today. They both worked hard and did a great job. Akemi even did all her own cutting/coloring!



Waiting for the moon took some patience.

We had to go on two separate pajama walks so that we could actually see the moon above the trees. Luckily we had tea and moon cakes to help pass the time.



The girls were pretty excited to finally see the moon!



Play slideshow - 9 
View photos in flickr

We Ride Again

Because we are lucky for many reasons Nearly 4 years on from Keira's diagnosis, she is doing relatively well. We've had our fair share of ups and downs, including a flare-up earlier this year after we thought we were done with meds. But for as much as we live on edge looking out for any sign of a flare up -- an odd fall on the playground, shaky movements on the iPad -- we're fortunate that Keira lives a "mostly" normal life. Why? We have no clue. No idea why she has responded to treatment where others haven't. Why she can ride a bike when other OMS kids can't. Why she enjoys reading where other's don't. Nor do we know if this will change. Earlier this year I attended an OMS conference in England and learned that doctors have been able to (1) identify depletion in brain matter for kids with OMS and (2) seen consistent reduction in IQ over time. We also learned that some kids do OK long-term, but they are the outliers. We hope that Keira is one of these kids, but we don't know. Help us take luck out of the equation In June, we hit a major milestone and funded TWO OMS Research Projects. For a disease this rare, it is still sometimes hard for us to believe. But your support, help from the Pablove Foundation, and interest from many doctors and researchers has gotten us to thie milestone and demonstrated what is possible. Now we're turning our focus to the future. If these projects are making progress, we want to be in a position to continue to support them, and if not, we know there is interest from other researchers who we'd love to support.  Our goal for PAA this year is $25K between Crystal and me.  If you can, please consider supporting either of us. Donate to Crystal Donate to Naveen Help us continue to build momentum, interest, and support to continue to sustain and fund badly needed research so that we can take luck out of the equation for kids fighting OMS. You've believed in us this far, we hope you continue to be a part of our journey into the next chapter. With Gratitude, Crystal, Keira, Akemi and Naveen