Past CureX – We Are All Unique: A Frank Discussion about Rare Diseases

Tuesday, February 28

Presented by Seema Kumar, CEO, Cure

Thank you for joining us for a special Cure experience to discuss the current state of affairs for the 30 million Americans afflicted with an often-devastating rare disease. We heard from world experts including patients, patient advocates, entrepreneurs, physicians, scientists, and others discussing the latest innovations, discoveries, frustrations, hopes, and fears about the nearly 7,000 rare diseases that may have impacted you or someone you know and love.

Keynote:

Jamie Heywood is an engineer and entrepreneur whose heroic efforts to save his brother Stephen from ALS launched the ALS Therapy Development Institute (ALS TDI) and founded PatientsLikeMe, one of the largest patient-generated data and patient-enabling companies in the world; and Alden Scientific, which is setting out to use AI and advanced genomic and ‘omic testing to monitor and diagnose–and to predict and hopefully prevent disease. Check out Jamie’s TED talk here. Pulitzer Prize-winning author Jonathan Weiner wrote the bestselling Thy Brother’s Keeper: A Story from the Edge of Medicine about Jamie’s attempt to save his brother.

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

We Are All Unique: A Frank Discussion about Rare Diseases

When: Tuesday, February 28, 5:30 pm – 7:30 pm
Where: Rooftop at Cure. 345 Park Avenue South, New York, NY 10010

Keynote:
Jamie Heywood, CEO, Alden Scientific, Founder of patientsLikeMe and the ALS TDI research foundation

Panel:
Moderator: Seema Kumar, CEO, Cure
Paul Kruzka, Chief Medical Officer, GenDx
Mette Dyhrberg, Founder & CEO, Mymee
Kammy Moalemzadeh, Founder & CEO of Arcadia Investment Partners
Lauren Ruotolo, Author, Content Creator, Keynote Speaker, and Disability Advocate

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Featured Speakers

About Jamie Heywood

Jamie Heywood is an engineer and entrepreneur whose heroic efforts to save his brother Stephen from ALS launched the ALS Therapy Development Institute (ALS TDI) and founded PatientsLikeMe, one of the largest patient-generated data and patient-enabling companies in the world; and Alden Scientific, which is setting out to use AI and advanced genomic and ‘omic testing to monitor and diagnose–and to predict and hopefully prevent disease.

About Paul Kruszka, MD

Dr Kruszka is a board-certified clinical geneticist who uses genomic and precision medicine to enhance the delivery of health care to individuals with rare diseases

About Mette Dyhrberg

About Kammy Moalemzadeh

Kammy Moalemzadeh is the Founder & CEO of Arcadia Investment Partners, a New York based company for 21 years. Arcadia has backed numerous NY based companies and incubators, creating jobs in the state. Prior to founding Arcadia, he was a Managing Director at Mentmore Holdings and a member of the merchant banking division of Donaldson, Lufkin and Jenrette. Kammy currently sits on the Board of Directors of SEO Sponsors for Educational Opportunity), a non profit organization providing supplemental educational and career support to young people from underserved communities. Mr. Moalemzade h graduated from the Wharton School of the University of Pennsylvania.

About Lauren Ruotolo

Lauren Ruotolo is an author, content creator, keynote speaker, and disability advocate. She brings her experience and inspirational voice to major corporations globally, helping them understand why the disabled community must be included in their DE&I strategy and talent plans. Most recently, Lauren was at Johnson & Johnson, overseeing all corporate video content, including all executive and communications content for their LinkedIn channel and enterprise marketing partnerships with film and T.V. studios. Lauren won three James Burke Marketing awards for her video storytelling during her tenure. Her most recent successes include a 20-episode live show entitled The Road to a Vaccine featuring Emmy Award-winning Lisa Ling. The live show was a breakthrough for Johnson & Johnson, where Lauren generated over 150 million views and 100 million press impressions with viewership in more than 110 countries. Before J&J, Lauren was V.P. of Marketing & Public Relations at Madonna's YouTube company DanceOn overseeing strategic marketing, public relations, and social media.

About Seema Kumar

Ms. Kumar joins Cure from Johnson & Johnson where she spent nearly 20 years in senior leadership positions, most recently serving as Global Head of the Office of Innovation, Global Health and Scientific Engagement. During her tenure, she led the launch of the company’s Innovation Centers, JLABS and Global Public Health initiatives, as well as the CoLaboratory at the World Economic Forum at Davos and the award winning COVID-19 educational broadcast program, “The Road to a Vaccine.”