Monday, July 6, 2015

2015 OMS Research Grants!

We are not fundraisers, we are not researchers, we are not doctors. We are parents, we are friends, we are family … united by the courage of our children, too foolish and stubborn to stop pushing, advocating and seeking hope even against the odds.

Four years ago, our daughter Keira was diagnosed with a rare cancer/autoimmune diagnosis, and we began our long uncertain journey seeking answers for a disease no one had ever heard of.

Opsoclonus Myoclonus Syndrome, like many rare diseases, is not well researched but as parents, friends, and family we did not want to let stand this status quo. Last year, we funded TWO OMS research grants through the Pablove Foundation, the first ever of its kind and an important milestone demonstrating that this could be done.

And this year, with your help, we have yet again exceeded our own expectations and funded TWO NEW OMS research projects, bringing the total to FOUR active research projects, when just a year ago there were none.

Please welcome our new principal investigators for our 2015 OMS Research Grants!

Jessica Panzer, MD, PhD
Children’s Hospital of Philadelphia
Miriam Rosenberg, PhD
Weizmann Institute of Science, Rehovot Israel
Prof. Dr. Franz Blaes
Justus-Liebig University, Giessen, Germany
Grant #1: Autoantigen Discovery in OMS – An Innovative Multidisciplinary Approach
Jessica Panzer, M.D., Ph.D., Children’s Hospital of Philadelphia and Miriam Rosenberg, Ph.D.,Weizmann Institute of Science
Dr. Jessica Panzer and Dr. Miriam Rosenberg will forge a three-pronged study on opsoclonus-myoclonus syndrome (OMS), which will research the culprit antigens that cause this disease and yield in the future new OMS diagnostics and drug targets, and give clues about how to harness the immune system to fight deadly neuroblastoma.

Grant #2: Modification of Onconeuronal Antigens in the Neuroblastoma of Paraneoplastic OMS by Free RNA
Prof. Dr. Franz Blaes, Justus-Liebig-University
Dr. Franz Blaes project will investigate the amount of free RNA in children with neuroblastoma with and without opsoclonus-myoclonus syndrome (OMS), which is a devastating autoimmune disease that affects kids with neuroblastoma, and determine whether the free RNA influences the reactivity of OMS autoantibodies. The outcome aims to test if RNA release will influence tumor growth.

Of particular note this year, we received significant support from the OMS Life Foundation to make these grants possible. Further, we’re thrilled that one of the principal investigators, Miriam Rosenberg PhD, is herself an OMS parent!

We'd like to thank you again for making this possible. Many of you have been with us since the beginning, and many of you have become part of our community along our journey. We also want to extend our gratitude to Jeff Castelaz and Jo Ann Thrailkill and the entire Pablove Foundation for being such amazing partners and supporters throughout this journey.

We're looking forward to what 2016 holds!

With love and gratitude,
Naveen, Crystal, Keira, and Akemi






















Cousins Movie Time!

Grandma and Grandpa took these cuties to a special showing of How to Train Your Dragon 2. 

It was a perfect choice since Miss Akemi insists that her name is Hiccup and that she is a dragon trainer. This was the first time we've been to a theatre with lounge seats! What a great way to stay cool in the heat of the summer.