The Personal and Personalized Journey through LIFE ITSELF

For some, life itself is about spending quality time with family and friends; and for others, it might be taking on new challenges and a quest for knowledge. If you are of a certain age, you may be an unpaid caregiver who is looking after aging parents while attending to younger children – sometimes under the same roof. These are individuals that Alexandra Drane refers to as Archangels, and her mission is to help and support this critical group. 

Alexandra and others like her shared these stories at LIFE ITSELF, a new, in-person event celebrating extraordinary minds and ideas intersecting health and medicine and sponsored by Rightpoint. Founded by Marc Hodosh and Dr. Sanjay Gupta, LIFE ITSELF brought together leaders, innovators, policy makers and investors from healthcare, technology, and entertainment to discuss key issues. The gathering took place over three days in San Diego and consisted of 10–20-minute TED-style talks and fire side conversations from the likes of Marc Cuban, Deepak Chopra, Dr. Anthony Fauci, Goldie Hawn and Norman Lear.

The Founders and Co-hosts of the Event

Our co-hosts for the event, and founders of LIFE ITSELF, are Marc and Sanjay. Marc Hodosh co-created and hosted the TEDMED Conferences previously, and this event feels like the next iteration. Dr. Sanjay Gupta is a neurosurgeon and Emmy-award winning Chief Medical Correspondent for CNN, another partner for the event. The concept for the gathering was born out of a simple idea: that those individuals working to advance science and medicine should be celebrated and cheered – just like we do athletes and entertainers. So often, their hard work, determination, and results are drowned out by other news in the media.

When asked by Sanjay about what motivates him for Life Itself, Marc replied: “All medical issues and disease and suffering is stuff that should be solved. The world should focus on it.” (See video here at 2:05) The mix of attendees for the event and their viewpoints and ideas is an amazing way to, as Marc puts it “…be with others from outside their box, in order to think outside their box.” As the event progressed, it was emotional and inspirational to see these new ideas presented in an engaging and accessible way.

Ensuring Safety and Protocols

The inaugural event took place at the historic and iconic Hotel del Coronado in San Diego from May 31- June 3. All speakers and attendees were required to show proof of vaccination and receive a negative COVID test at registration. While presentations took place indoors, all other social activities, including meals, were conducted outside to ensure guest safety. Health professionals were staffed to assist with anyone experiencing symptoms or in need of care. Another sponsor, Cue Health, gave each attendee one of their COVID test kits with 10 cartridges to self-administer during the event.

The Cue testing platform is easy to use and produces lab quality results in about 20 minutes with their app and device. This is the same at-home test kit that was used by the NBA during their bubble season and this season for the MLB. The portable system is 97.8% accurate versus lab-based PCR testing and can easily travel with you. What I am excited about is that their system will be capable of more than just COVID tests. Cue is developing additional tests in areas such as respiratory (including flu and respiratory syncytial virus, or RSV), sexual, cardiac, and metabolic health.

Personal Stories Shared on Stage

Opening the conference was Academy Award winner Troy Kotsur who gave the first of many emotional and personal stories during the event. Troy starred most recently as Frank Rossi in the Oscar winning film CODA (Child of Deaf Adults), and he spoke about communication barriers between parents and adults where one is deaf and the other can hear. As a deaf child of hearing parents, he was not able to verbally communicate as other children can – think about those early markers of development, language, speaking, putting words together – these did not happen for Troy until he started learning ASL (American Sign Language) when he was 4 years old. It was learning sign language and finally being able to communicate that Troy says ultimately saved his life.

Another inspirational and powerful story came from Susan Schneider Williams, the widow of the late great Robin Williams, who talked about her mission to raise awareness for Lewy body dementia, a rare neurological disorder that ultimately led to his death by suicide. This is a disease that is nearly impossible to diagnose (or is often misdiagnosed) due to symptoms being very similar to Parkinson’s and was only found in Williams after his autopsy. This disease impacts a patient’s mental abilities and can cause increased anxiety and hallucinations. She also shared a moving video with her and Ted Turner, founder of CNN and current patient diagnosed with LBD in 2018.

In between some sessions there were musical acts, poetry and magician Eric Mead who performed. Eric is one of a few magicians that has fooled Penn and Teller with his slight of hand, up close illusions. Eric talked about the power of labels and how once a person is diagnosed with a disease or disorder, that label changes them forever – their friends go from asking “what are you doing” to “how are you doing” – something he experiences as a patient himself.

Advancements in Personalized Medicine Celebrated

There were some incredible scientific breakthroughs presented on stage as well. Everything from advancements in the human gene editing to leveraging AI to accelerate drug development, from cultivating meat by growing cells to 3D printing an unlimited supply of organs.

Martine Rothbaltt, founder and chairwoman of United Therapeutics, shared with Marc and Sanjay a 3D printed human lung. Working with Martine is the inventor of the 3D printer, Chuck Hall, who in his 80s, is helping Martine to create “the most complex object ever 3D printed in the history of humanity.” (See video here at 9:45)

Martine and team started by modifying the pig genome so that pig organs can be transplanted into humans – now they are using cells derived from the patient to bioprint an unlimited supply of patient specific organs – they run less risk of rejection, less risk of taking medications and have human trials in the next 5 years. Martine believes there is no part of the body that cannot be 3D printed. She is partnering with Dean Kamen to create the technology and infrastructure to do this – and since these organs need to be transported, she is also creating zero carbon aircraft to move these organs to patients.

Similarly on stage we had Doris Taylor who is on a mission to create personalized, on demand replacement hearts for everyone. Traditional transplants only work because someone has to die for someone else to live, and heart disease is the number one killer. On stage here, she has one of the first bioengineered human hearts ever created, something she pushed to do in her own lifetime. (See video here at 16:15) “Trust your crazy ideas because they are worth it!” While watching these advancements, it is clear that the future is here and is happening now.

Entertaining While Educating

While not able to attend in person, we were treated to an interview of Dr. Anthony Fauci by comedian and creator of Family Guy, Seth MacFarlane. Through a combination of wit, humor, and serious questions posed by Seth, Dr. Fauci discussed lessons learned during the pandemic and what we can expect for the future of COVID. 

“We are not going to eradicate this virus; we’ve only eradicated one virus in human history and that is smallpox,” Fauci stated. “And it had all the characteristics to be able to be eradicated. It didn’t vary, number one. We had a widely accepted vaccination campaign. And the immunity that was induced, either by infection and/or getting infected and vaccinated was virtually lifelong.” (video of the full interview here)

The final evening of the event culminated in a celebration of the life of the incredible Mr. Norman Lear who will be celebrating his 100th birthday next month. Best known for creating and producing culturally significant TV shows in the 70s, such as All in the Family, Sanford and Son, Good Times (the list goes on), Norman shared how he finds joy in so many different ways. 

One key factor he talks about that leads to longevity is laughter. “Laughter is so spontaneous and so unregulated. It just happens to us.” He is certain that the time he spent with audiences in that spiritual act of laughing has added more to extend his life. (see video here at 7:45)

The Future of LIFE ITSELF

Although the in-person gathering has concluded, we have forged many connections that we expect to stay up-to date with through to the next event. The attention and intention that Marc and Sanjay put into this initial conference is itself amazing, and we look forward to continuing our partnership and experiencing LIFE ITSELF together again soon.

Special thanks to my fellow Rightpointers who attended LIFE ITSELF: Matt Whitlock, Maria Riccobono, Mundi Morgado and Brandon Rozelle. For more information on the conference, check out the official website (built by our own Mundi!) at http://lifeitself.health and all videos provided by CNN at http://cnn.com/lifeitself. Search #LIFEITSELF on Twitter, Facebook, Instagram and LinkedIn for inspirational posts from the community.