First Person: Amanda Anderson is Assistant Director of Quality, Patient Care Services at Mount Sinai Beth Israel

I was very lucky growing up. I never had to worry about the cost of health care. My parents were always insured, and my need to see a doctor was never limited by their ability to pay. I grew and remained healthy, regularly visiting my doctor and dentist for well visits and when my health required throughout my preteen, high school, and college years.

I knew that not everyone is so lucky. But it really hit home when I first learned about the Mount Sinai Adolescent Health Center.

Each year, the Health Center provides some 10,000 adolescents or young adults in need with comprehensive health care. It’s a world leader in adolescent health, with a renowned medical fellowship and award-winning staff. But it needs our help.

I’m hoping to do my part by running what would be my first marathon Nov. 5 at the TCS New York City Marathon. I will be part of a team raising funds for the Center. Every $1,000 our team members raise will support a full year of comprehensive health services for an adolescent or young adult. Everything is covered, including preventative primary care medicine, dental care, mental health care, and sexual and reproductive health care.

It was one of my physicians who first got me into running as a young twenty-something woman. I met him during a time in my life when I really needed his care. Looking back, I don’t know how I would have fared without his treatment. But I am certain that my health and recovery directly benefited from my absence of concern about how his bill would be paid.

With mental health and chronic illness starting earlier and earlier in adolescence, and with the increasing lack of security in our health care system, it’s imperative that all young people have access to full, comprehensive, high-quality care.

That’s why I’m so proud to be running on behalf of the Adolescent Health Center, because it meets and exceeds this triple aim. And in doing so, Mount Sinai improves thousands of young lives.

You can learn more about the Mount Sinai team, or you can make a contribution to help me reach my goal by visiting my Crowdrise page. You can also keep track of my training via my blog, www.amandajanderson.com, or on Twitter, @ajandersonrn.

Dr. Desnick accepting the Rare Impact Award at the National Organization of Rare Disorders, Rare Impact Awards gala in Washington D.C. Thursday, May 18, 2017.

The National Organization for Rare Disorders (NORD), a nonprofit organization that supports 30 million Americans with rare diseases, recently awarded a 2017 Rare Impact Award to Robert Desnick, MD, PhD, Dean for Genetics and Genomic Medicine at the Icahn School of Medicine at Mount Sinai.

NORD cited Dr. Desnick’s longstanding dedication to developing life-changing treatments for people with lysosomal storage diseases and porphyrias. (Lysosomal storage diseases are characterized by an abnormal buildup of toxic materials in the body’s cells, whereas porphyrias are a group of disorders caused by deficiencies of enzymes involved in the production of heme—a key component of important proteins in the body.)

In nominating Dr. Desnick, NORD stated that he “is among the few physician-scientists whose outstanding and innovative basic, translational, and clinical research accomplishments have led to effective treatments and prevention of rare genetic diseases.” Over the course of his more than 40-year career, Dr. Desnick—who is also Professor and Chair Emeritus of the Icahn School of Medicine’s Department of Genetics and Genomic Sciences—has developed therapies for Fabry disease and Niemann–Pick disease, and co-founded the biotech company Amicus Therapeutics, Inc.

His work in genetics has also led to the development of routine screening tests for more than 280 panethnic pediatric diseases. An elected Fellow of the American Association for the Advancement of Science and a Member of the National Academy of Sciences, Engineering, and Medicine, Dr. Desnick has published more than 500 peer-reviewed articles and 235 chapters and reviews. In accepting his award at NORD’s Rare Impact Awards event in Washington, D.C., in May, Dr. Desnick expressed his support for patient advocacy and the need for government-sponsored research funding. “Most of all,” he said, “we need to encourage young researchers to ride the wave of innovation.”

From left: Julia Nicolaou Burns, MPH, Administrator, Selikoff Centers for Occupational Health; Michael A. Crane, MD, MPH; Monsignor Kevin Sullivan, PhD, Executive Director, Catholic Charities of the Archdiocese of New York; and Beatriz Diaz Taveras, Executive Director, Catholic Charities Community Services.

A newly awarded $1.3 million grant from Catholic Charities is helping the Mount Sinai Health System address the unmet medical needs of 9/11 first responders who may be uninsured or facing extreme financial hardship. Many of these workers, who assisted in the cleanup efforts at Ground Zero during the World Trade Center disaster, wore little or no protective gear and received minimal supervision while directly handling materials that contained asbestos and other toxins.

The Catholic Charities grant will help these men and women pay for counseling, transportation to and from medical appointments, and other uncovered health-related expenses.

“Many responders today are unable to work in environments that further expose them to chemicals, dusts, or toxins, or heavy physical labor,” limitations that make it difficult to find or maintain employment, says Michael A. Crane, MD, MPH, Director of the World Trade Center Health Program Clinical Center of Excellence (CCE) at the Icahn School of Medicine at Mount Sinai, and Medical Director of the Selikoff Centers for Occupational Health. He says the situation at Ground Zero became so toxic that “airborne concentrations of dust overwhelmed the upper airways of the responders, and particles that might otherwise have been filtered out directly entered the workers’ tracheae, bronchi, and lungs.”

Says Philip J. Landrigan, MD, MSc, Dean for Global Health and Professor of Environmental Medicine, Public Health, and Pediatrics at the Icahn School of Medicine at Mount Sinai: “We are delighted that with the support of this grant from Catholic Charities we will be able to provide these workers with the care they so richly deserve and earned through their selfless sacrifice.”

Recently, the U.S. Centers for Disease Control and Prevention and the National Institute for Occupational Safety and Health renewed two contracts at the Icahn School of Medicine that will continue to fund the World Trade Center (WTC) Health Program CCE and the WTC General Responder Data Center for another five years.