Insatiable

Insatiable
adjective
1. not satiable; incapable of being satisfied or appeased.
Synonyms
voracious, unquenchable, bottomless.

Over the past 10 years I have learned things about myself that I never knew before having children.

In particular as it relates to my son who has had so much taken from him and the subsequent quest to uncover research dollars I find that I am insatiable.
I have impossibly high expectations.
I will never be satisfied.

I am incapable of celebrating what has been accomplished because I am always looking forward – always looking for more.
Always pushing for the impossible.

Discovering that I am obsessed with the finish line and getting there no matter the cost is an interesting self realization. And leaves me to wonder if  there is a finish line that I could ever finally reach and be satisfied with?

Would impacting survival dramatically for NB kids in the next 5 years be enough?
No.
But we will help fund the work that will do this.

Would turning NB into a chronic condition that can easily be managed with low toxicity drugs be enough?
No.
But we will help fund the work that will do this.

Would curing every kid with NB with a snap of my fingers be enough?
Perhaps.

But what about all the kids whose bodies have been destroyed with the ‘cure’ and who are sitting around just waiting for the other shoe to drop?
Organ failure. Leukemia from the chemotherapy. Hearing loss. Cognitive deficits. Infertility. Physical and emotional scars.  The forever looming specter of relapse.

We have to demand and expect the impossible in order to achieve it – this is the only way we can cure the incurable.

You make this possible through your donations, your volunteer hours, coming to our events and running with our team.  Your continued involvement and support is how we will make this happen – when paired with our laser focus of only using your money to create survival altering clinical trials.

You can donate any day and we’ll be glad for your support.

However, this year we’d also ask you to get involved in our Falmouth Road Race team to not only raise funds but to raise awareness.  Our team has grown from 10 runners in the first year to 40, then 110 and this year 150+.

Get involved in helping us continue that growth.  Join our road race team today to help us fund this work and make the impossible possible for these kids so desperately in need of our help.

Together we can do anything.

Patrick Lacey
Founder