Falmouth 2014 – Why Beat NB?

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There are countless non-profits out there doing all sorts of wonderful things to support causes that are near and dear to their hearts – and many of yours.  In the childhood cancer space alone there are innumerable charities dedicated to helping kids or families with cancer.

So why Beat NB?

I can honestly say that you would be hard pressed to find another place where your donations – and the money your raise through your hard work – can have such an immediate impact on literally saving the lives of kids with cancer.

But how – doesn’t everyone say something similar?

We have worked with the incomparable Dr. Giselle Sholler to raise funds to support her research and clinical trials for the past 7 years.  In that time she has grown from a single investigator initiated trial at her clinic in Burlington Vermont to lead a national consortium of academic centers and children’s hospitals offering numerous clinical trials to children with cancer all across the United States.  She sees patients in Grand Rapids Michigan from all over the country – and world – who travel to see her for her clinical trials.  Trials that you literally have helped to open with your support.

So why is that a big deal?
Our country spends less than 200 million dollars a year on childhood cancer via the National Cancer Institute.  That is for all childhood cancer research and trials.
Did you know that childhood cancer is not a disease – but instead is made up of many different kinds of cancer that impact children?  There are 12 major types of childhood cancer with neuroblastoma being only one of them.  So as you can imagine funds are very limited and what funding that there is to be had is usually gobbled up by later stage trials or therapies that – quite frankly – are a decade behind the times.  Can you imagine if Breast, Prostate, Lung, Pancreatic were all lumped in as “Adult Cancer” with just 200 million go go around?
While that is an unfair comparison it is to highlight a very important point.  There is not nearly enough funding to even scratch the surface and with no ‘blockbuster’ drugs to generate revenue to justify the development costs for a new drug there is also little pharmaceutical investment in childhood cancer research either.
What we have managed to do by working with other NB parent led foundations is to quite literally support the creation of this consortium. Dr. Sholler makes incredible sacrifices that many other doctors would not be willing to make.  She is fully committed to doing whatever it takes to save each child and is totally focused on doing whatever she can do today – with whatever tool is at her disposal – to save each child’s life.
She is unique in not only in her desire to take this approach but in her unmatched ability to perform this work and she succeeds where most others would fail.  Why?  Because collaboration is not something easy for researchers and clinicians at different institutions to embrace and it is critical to  her success and Dr. Sholler has an undeniable power to unite folks in the common goal of saving these kids.
And as she marches out into the barren landscape of relapsed neuroblastoma –  a place of death, broken dreams and destroyed families – she radiates HOPE.  She creates options where there were none before and for the first time these families have someone walking beside them – holding their hands and sharing their belief that their children can be saved.  As she leads this charge we follow her path – hand in hand with other NB parent foundations – and do all we can to support her efforts.
She does not chase the funding – she chases the cure.
So it is incumbent upon us to give her the tools she needs – tools we can provide with your support.
She is changing the landscape of this disease – a disease that is ‘incurable’ once it comes back – and you are helping to make that happen with each dollar raised.  Please do not be afraid to ask your friends, family and colleagues for support of your efforts to run to BEAT NB.
And please do so with the knowledge that your ‘ask’ turns into dollars which are impacting survival today.
Impact Survival
Dr. Sholler’s work is groundbreaking and you are supporting clinical trials that are impacting survival today. It is impossible to explain how different this is than the traditional research and clinical trial method.  In the time we have helped to fund 6 trials perhaps one would have been opened relying on traditional funding. More importantly, these trials are written in such a way to not only offer novel therapies but to give parents a reason to enroll their kids on these studies with not just a hope to ‘advance research’ but to save their child as well.
In all of her ‘spare time’ Dr. Sholler is raising two wonderful children of her own and is training to run Falmouth along side all of you this August!
Who are you helping?
If you click on Dr. Sholler’s fundraising page above you’ll see a picture of her with the amazing Lilly-Mae. Lilly-Mae enrolled on one of the clinical trials that Beat NB has opened and funded thanks to the hard work and effort of folks just like you. Lilly-Mae enrolled on this trial 9 months ago and lives in Ireland – she makes the trip to Grand Rapids Michigan every 12 weeks for scans hoping that they’ll continue to show “No Evidence of Disease”.  Tomorrow I am flying out to Grand Rapids for a day of meetings and will be having lunch with Lilly-Mae and her dad and I ask that you keep her and her family in your thoughts and prayers and they await her scan results.
In Ireland – where things are even more desperate for kids with NB – her parents were fortunate to discover Dr. Sholler here in America. And they have discovered what everyone discovers once they meet her – that wherever you find Dr. Sholler you will find Hope.
I’ll let her mom Jude’s words below share what this means to her and every family you’ll be helping.
“On 1st June 2012, Lily was diagnosed with stage IV Neuroblastoma. After 17 months of treatment, in October 2013 she finished treatment & was declared in remission. Remission for neuroblastoma is not what people think it is, there is a 70% chance that the cancer will return & in that event, to date, there is no known cure.The NMTRC’s DFMO trial, literally for us offers hope in a bottle. Lily-Mae has been on the trial for 9 months now & has had no negative side effects. We travel from Ireland every 3 months for scans to see if she is still free of cancer in Grand Rapids Michigan. The NMTRC are searching for a cure and , as a neuroblastoma parents, we are extremely grateful to them and to you for your support of this groundbreaking work.”
–  Jude Sibley
Mom to Lilly-Mae
Thank you all for making a difference by raising money to support our mission to BEAT NB.

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