Zaggo is a national nonprofit organization founded by Roberta Carson in 2010. Zaggo is dedicated to providing patients and their family caregivers with the information and tools they need to become empowered, engaged, effective members of their medical teams for the best possible care.
Please watch our story in this video or read below.
Our story
In 2005, my 17-year-old son Zach was diagnosed with a DIPG, an inoperable brain tumor with a survival rate of less than 2 percent. We quickly learned that being a caregiver is hard work, with new medical terms to learn, difficult treatment decisions to make, complicated medication regimens to follow, and care to coordinate among multiple doctors.
We adjusted to our new routine, which included daily chemo pills, frequent doctor appointments, and MRIs every 6 weeks.
I felt like I knew what I was doing, asking the right questions, and keeping track of everything in my notebook.
However, I wasn’t as “with it” as I felt.
At times I thought, why didn’t anyone tell us this? You don’t know what you don’t know is an unfortunate fact of life when navigating the medical world.
Zach died at age 19 due to respiratory failure. After he died, I became committed to helping other patients and families manage medical conditions.
Effective communications lead to better outcomes, but that’s not easy.
Being a patient or family caregiver is hard work for which no one is prepared. Most people don’t know what questions to ask, have a hard time processing what they’ve been told, and struggle to manage it all.
I started the nonprofit Zaggo and created the ZaggoCare System, a product that features a 123-page guide and organization tools to empower patients and families.
By helping others be more engaged in the process, ZaggoCare can help patients have the best outcomes possible and reduce the risk of misdiagnosis, medication mistakes and other medical errors.
The ZaggoCare System can help people manage any kind of illness or injury.
100% of profits from Zaggo are donated to the Zachary Carson Brain Tumor Fund. Thanks to the support of people who buy the ZaggoCare System, we’ve raised more than $900,000 to date for one of the rarest and most deadly pediatric cancers, which otherwise receives little funding.