Welcome back to another Monthly Round Up! Another great month is in the can, and we’re excited to reflect on the awesome guests we sat down with. It’s amazing to think we’ve been at this for over a year now (!!), and the connections, conversations, and stories shared have been truly extraordinary. March was certainly no exception!
So who did we talk to in March? We spoke with Melissa Talwar about 20+ years living with fibromyalgia; Amanda Nicastro about her “heroic” organ donation; Jen Msumba about life on the autism spectrum; and Andrew Kantor about patient advocacy & playing to win.
If you’re someone struggling with an invisible illness, we sincerely hope that these conversations not only provide insight into other perspectives, but also comfort in the fact that you’re not alone! Take some time for yourself and tune into this month’s episodes.
Melissa Talwar was diagnosed with fibromyalgia at the age of 14. 20+ years later, living in chronic pain and regularly becoming bed-bound, she watched her symptoms stabilize and her decline subside after her discovery of biohacking and functional medicine. Not long after, she went on to establish the International Support Fibromyalgia Network, a non-profit patient-led organization created to fulfill the unmet needs of the fibromyalgia community. #SupportFibro believes in collaboration. It is open, participatory, and dedicated to educating, advocating and inspiring the fibromyalgia community. Melissa is also a Board Certified Functional Medicine Health Coach, Certified Wahls Protocol® Health Professional, and ReCODE Coach (Bredesen Protocol).
Amanda Nicastro is a writer and actor based in NYC. In 2014, her sister Brenna needed a new kidney. While Amanda wasn’t a match, she was able to find an exchange program that allowed her to donate a kidney for someone in need, and for Brenna to receive a kidney that met her body’s needs. While Amanda isn’t the most comfortable with the idea of being a “hero” — a title often bandied about in response to her “sacrifice” — she decided to use this overwhelmingly positive response to her actions to call attention to the importance of organ donation…while also hilariously sharing the ins and outs of the kidney donation journey (such as: carrying a cooler full of her own pee through the NYC subway). She wrote the award-winning solo show I’m Just Kidneying, which takes a whimsical look at the process of living kidney donation and “pokes holes into the idea of what it takes to be ‘hero material’.” The show has toured extensively in the US, and even recently at the Edinburgh Festival Fringe. As AM New York says, “She may have donated a kidney to a stranger, but Amanda Nicastro still has her funny bone.”
If Jen Msumba of Rebranding Autism isn’t a staple on your social media feed, then take our advice and get her good vibes on your radar. Jen lives on the autism spectrum, and has been through hell and back in her journey to comprehensive care and self-realization. Much of her success has been in facing personal challenges, and seeking the joy in all things to live a full and varied life. An accomplished musician, she has risen to prominence in the patient leadership community through her YouTube channel, where she posts videos of herself playing piano versions of pop music. As her confidence has grown, she has become more outspoken about her daily struggles, and works to inspire others to increase their confidence, get out of their comfort zones, and try new things — something that can be a real challenge for many on the spectrum. She now lives in a caring, largely independent-living facility, where she is happy, healthy, and in control of her own destiny. It has been hard won, but worth the fight…and she’s here to serve not only the autism community, but also those looking in from the outside. Team UP: meet Jen. She’s as bright a light as there is, and she deserves our attention.
Andrew Kantor is an Associate at Kantor & Kantor, LLP. The son of the founding namesake attorneys, his practice is focused primarily on helping individuals obtain wrongfully-denied disability and life insurance benefits in both ERISA and non-ERISA (bad faith) policies. A client-centered attorney, he has emerged as one of the US’s leading experts on fighting disability denials, with a particular focus on chronic-fatigue-related illnesses like ME/CFS and Lyme disease. Andrew serves on the Board of The Elder Law and Disability Rights Center, and he was named a 2019 Rising Star in Southern California by Super Lawyers. In this episode, he shares his passion for advocacy, the logic behind disability rulings, and how to read between the lines when communicating with insurance companies and physicians.