January was a crazy month. I love work and what I do, as well as the people I get to work with everyday. Add strategic and time sensitive projects, and the workaholic side of me emerges and I get easily consumed.
Only this time, working alone wasn’t enough to fulfill me. I greatly missed that space I’ve created over the past several months to be with my family and Naya’s memory. I didn’t have the mental capacity to be in the moment with the people and thoughts that matter most to me. I veered off course…just for a little while. With the help of my brother, caring friends, Hank and Zak, I quickly figured out why I was feeling off center. I was missing that space, and petty things bother me. That space keeps me grounded and focused on the bigger picture.
I’ve profoundly changed over the past two+ years, and being grounded in who I am and on what matters most to me is my quest. Draining my energy worrying about what others do, petty drama, or things I can’t change is exhausting. I need that energy for what I want to do for me, my family, people I care about, and most of all, Naya. This blog is part of that quest.
This week will be 3 months since Naya passed. I miss her more every day. I believe she’s with me every minute of the day. I’m proud to say that I am more grounded in what she stood for and am making progress.
There’s progress on our goal to cure pediatric cancer. Naya’s foundation paperwork is getting filed so we can get it up and going very soon. We also received over $25,000 in donations in January from amazing people and organizations. These funds will go be directed towards Medulloblastoma (Naya’s disease) sequencing at CHOP. Genetic sequencing enables future targeted therapies and advances in pediatric cancer treatments.
This week, President Obama made it a priority to fund the Precision Medicine Initiative, calling for new funding to build a national infrastructure that will allow researchers to custom-design more effective therapies based on a patient’s individual genetic profile.
Read about it. It might change your life.
“Precision medicine refers to treatments tailored to a person’s genetic profile, an idea already transforming how doctors fight cancer and some rare diseases.”