A beautiful MUST READ from @LindziScharf 💚Mom Says IVF Saved Her Life After First Child Died at 3 from Rare Disease: 'A Second Chance' (Exclusive) people.com/lindzi-scharf-… via @people
I’m honored to share that my @latimes piece about Evan was selected as a “Notable Essay” within the prestigious “Best American Essays 2023” anthology — alongside the likes of David Sedaris. Thank you to Vivian Gornick and Robert Atwan for the recognition: latimes.com/lifestyle/stor…
Some personal news: Today’s my first day at The New York Times.
Here’s a photo of me months before I started here as an intern in 2017. I’m honored, grateful and thrilled to be back.
So proud of my mother who wrote a children’s book in honor of my late daughter Evan Frances. “Piper Joy and The Grand Old Tree” benefits mitochondrial disease research. Purchase your copy today: piperjoybook.com
My family has a complicated history with Hollywood and Los Angeles, a fact I hadn't considered until writing this piece. But I'm grateful that Southern California has become a full circle place for our family to heal. My latest essay is now online: pasadenamag.com/people-places/…
Resharing this essay I wrote when the pandemic first unfolded—in case it helps. Uncertainty is a feeling I’ve made friends with. It doesn’t mean I don’t soul search, but my daughter helped me make peace with the unknown. #writersstrike#actorsstrikelatimes.com/lifestyle/stor…
Another beautiful child we know who got diagnosed with the same cancer as Francesca just passed away. One thing about about our for profit healthcare system is that rare disease last like childhood cancers often get left behind in drug development because of the lack of profits that can be made. We’ve made such amazing innovations for diseases that have hundreds of thousands of cases a year. And that is wonderful and amazing and I am so grateful for that but wish we could do more for our kid. Because of the system we live in, the only people who fund childhood cancer research are the government or private funds like the Team Beans Fund.
Watching your child go through cancer treatment. It is horrible and awful as you can imagine.
The archaic chemotherapies they use destroy their immune systems leaving them vulnerable to even the most minor infections.
If your child does manage to survive, infant brain cancer, they are often and almost always left with horrible, lifelong side effects of the treatment.
People often tell me how much Francesca smiled through treatment, but that’s only because I have not shared photos of her worst moments. I wish I did not have any of those images in my head.
I sadly do not actually have much hope that things will change. We have raised more than $3 million through grassroots donations but this work cost millions of dollars and takes years.
Pharmaceutical companies actively lobbying against regulations, requiring them to do more work on this issue. Lobbyists make seven figures while childhood cancer families go bankrupt.
You can support us at TeamBeanPMC.com to help the Infant Brain Tumor Fund. We are doing everything we can to make a difference -people say every little bit helps, and it is kind of a cliché but with childhood cancer research, it truly is true.