NPO 011: Monika Jones (Brain Recovery Project)
Today's Guest: Monika Jones, JD
Monika Jones serves as Chief Executive Officer and Board Chair of The Brain Recovery Project: Childhood Epilepsy Surgery Foundation and is a co-founder of the organization. For most of her professional career she was a litigator representing corporations in lawsuits brought by employees. She has served as assistant general counsel of Luminent, Inc., an optical component manufacturer, general counsel of Brown and Riding Insurance Services, a national wholesale insurance broker, and then as a vice president of Brown and Riding’s casualty division.
After her first son, Henry, was born with total hemimegalencephaly and required several surgeries to eventually complete anatomical hemispherectomy, she and her husband Brad Jones founded The Brain Recovery Project to initiate and fund research to better understand neurorehabilitation after hemispherectomy surgery. An active member of several social media communities where families of children with intractable epilepsy, she quickly learned how underserved children are after having brain surgery to stop seizures. At her behest, the board of directors in 2016 agreed to expand the organization’s reach to include all resective and disconnective procedures.
She is a graduate University of California at Los Angeles and received her juris doctorate from the University of Southern California. Monika is an active member of the Council of Parent and Attorney Advocates and is a founding board member of Watkins VITAL Care Program, an innovative new program that offers an educational environment for adults with moderate-to-severe autism who have aged out of the school system. She has served on the board of Portals, one of the oldest and largest mental health organizations in Los Angeles which offers mental health services in Central and South Los Angeles. In her spare time, she provides low-income families of children with significant special needs with her legal services pro bono.
Nonprofit Spotlight: Brain Recovery Project: Childhood Epilepsy Surgery Foundation
The mission of the Brain Recovery Project is to help children reach their full potential after brain surgery to stop seizures. They accomplish this goal through five key program areas: new research, translational research, innovation, educational advocacy and training, and parent education initiative.
Monika shared many lessons that she has learned through this work! She began by sharing the importance of knowing your stuff. When starting a nonprofit, it's really important to become an expert in your field. Monika has done this through talking to experts, reading (and re-reading) medical journals, medical books, etc. Monika spends an inordinate amount of time staying up to date and truly understanding the ongoing discoveries related to neural plasticity, hemispherectomy surgeries and IEP support plans.
As our conversation moved toward funding, Monika recognized that funding can't only come from the folks directly impacted by your work. For Monika, this meant that she has to look beyond the families of children who have had part or half of their brain removed. She has been lucky to get angel investors and recently has received several grants.
Monika is a clear community builder and it was fascinating to hear the many ways she has helped build a community for the Brain Recovery Project. Creating opportunities for both virtual and in-person communication, Monika understands that helping people connect with others experiencing the same or similar situations can be very powerful. Logistically, she also shared that when planning a conference, be sure to have a budget ahead of time, a sense of how many people will likely attend (and book rooms at that hotel) and get contracts for everything ahead of time.
Finally, Monika shared a great tool tip: Asana. Monika likes this tool because it helps her stay organized even when she needs to be wearing several hats all at once. Asana is a free project management tool.
Story of Good: Beacons of Hope
The photo above for the Story of Good was taken at their annual conference. On the left is Jayna. She had the youngest known hemispherectomy when she was 28 days old and she attended the conference with her mom, Sunshine. Second from the right is Abby Lampley. Abby had hemispherectomy at age 4 to stop seizures caused by Rasmussen's encephalitis. On the right is Levon, who had hemispherectomy at age 1 1/2 to stop infantile spasms. Through this conference (and the Facebook community), families are able to support one another. Connecting with others on the same journey is so important and the Brain Recovery Project helps drive that. Abby attends the conferences each year to give parents hope. Especially parents of very young children who are faced with the decision of whether to have the surgery or not, it's so helpful for them to see that a seizure-free life IS possible.
Next Guest: Adam Walker, co-founder of 48in48.