We Are All Unique: A Frank Discussion about Rare Diseases
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We Are All Unique: A Frank Discussion about Rare Diseases

2/28/2023
When: February 28, 2023
5:30 PM – 7:30 PM EST
Where: CURE ROOFTOP
345 Park Ave South
New York, NY  10010

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About this event

Join us on the iconic rooftop of Cure for Rare Disease Day when we launch CureX’s inaugural event series, where we will share stories and engage on an important discussion on how we can move the needle in finding safe and effective cures for the 30 million people in the U.S. afflicted with a rare disease.

•  Keynote by Jamie Heywood, TED speaker and founder of PatientsLinkeMe and the ALS Therapy Development Institute-- "Are You Ready for the Bio-Industrial Revolution?"

•  Panel of experts, entrepreneurs, and patients

•  Music performance to soothe your soul 

•  Viewing of a powerful new documentary film just out: Undiagnosed (trailer)

•  Demos from GeneDx and MyMee

•  Bestselling book available about Jamie Heywood's struggle to save his brother from ALS-- His Brother's Keeper, by Jonathan Weiner

•  Networking over drinks and delicious noshes from the Cure kitchen 

 

Panel of industry experts, entrepreneurs, and patients

•  Jamie Heywood, CEO, Alden Scientific, Founder of PatientsLikeMe and the ALS TDI research foundation

•  Paul Kruszka, M.D., CMO of GeneDx

•  Mette Dyhrberg, Founder & CEO, Mymee

•  Kammy Moalemzadeh, Founder & CEO of Arcadia Investment Partners

•  Lauren Ruotolo, Author, Content Creator, Keynote Speaker, and Disability Advocate

•  Seema Kumar, CEO of Cure

 

Agenda

5:30 p.m. Reception, wine, beer, cocktails, and noshes; music

6:00 p.m. Program

Musical Performance 

Keynote: Jamie Heywood, CEO Alden Scientific, founder of PatientsLikeMe and ALS Therapy Development Institute 

Panel

•  Paul Kruszka, M.D., CMO of GeneDx

•  Mette Dyhrberg, Founder & CEO, Mymee

•  Jamie Heywood, CEO, Alden Scientific

•  Kammy Moalemzadeh, Founder & CEO of Arcadia Investment Partners

•  Lauren Ruotolo, Author, Content Creator, Keynote Speaker, and Disability Advocate

Audience Q&A

Demo

•  Mette Dyhrberg, CEO, MyMee-- demoing an app that helps auto-immune patients identify triggers for attacks and how to control symptoms implications. 

Film

•  Undiagnosed, a documentary film directed by Katie Maritz, PhD and Nicholas Miller. In partnership with FireFilms and the Strategic News Service (trailer).

7:00 p.m. Mingling, more demos, and informal discussion

7:30 p.m. Wrap

 

More About Jamie Heywood

Keynote speaker, Jamie Heywood, will share his journey after finding out that his brother, Stephen, had the terminal illness ALS. Jamie Heywood founded the ALS Therapy Development Institute, the world’s first non-profit biotechnology company and accelerated research on the disease by hiring scientists to develop treatment outside of academia and for-profit organizations. They were the first to publish research on the safety of using stem cells in ALS patients. Jamie has raised more than $50 million dollars for ALS and continues to serve the ALS community.

 

About CureX

CureX is a purposefully curated event series on Cutting Edge Conversations About Your Health. This elevated series includes experiences that bring together the healthcare community in unexpected and creative ways to advance healthcare.