Still an elusive subject

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Central Park Tennis Courts open for business! Photo: JH.

Wednesday, April 3, 2019.  Yesterday was sunny with temp touching 50 degrees but with a decided chill in the air. And then last night the big windy Nor’easter blowing up from the South, predicted to hit us, moved out to sea by late evening, after dropping a light, cool rain.

The social calendar is beginning to fill up, and it’s serious. I mean the objectives that are gathering people together are serious. For example:

Two weeks ago the city was noticeably quieter. It was school vacation time and many families were out of town or just lying low in our last of winter weather. But on a Tuesday evening — March 12th — at Guastavino’s, 400 women, and some men gathered for a very special cause: Women and the Brain. Project ALS’ objective was to educate women about brain health.

Valerie Estess, Director of Research and co-founder, Project ALS. In 1998, Valerie’s sister, Jenifer Estess, a 35-year-old New York theater and film producer, was diagnosed with ALS. The prognosis was grim. Her doctor told her to “max out her credit cards and eat junk food.” At that time, ALS doctors and scientists worked mostly in isolation, with little support. Jenifer, her friends and family, set out to change that by founding the non-profit Project ALS the same year. Fund recipients were required to work together in small teams, toward a new standard of results-oriented accountability. In twenty years, according to the organization, Project ALS has advanced ALS research significantly, overseeing productive collaborations among 25 leading research institutions, the discovery of over 60 ALS genes and the development of the world’s first patient-based models of ALS for laboratory testing. It has also supported and managed the first ever facility dedicated exclusively to ALS and stem cell research, and accelerated drug testing and clinical trials through the identification of new drug targets. In 20 years, Project ALS has raised over $90 million, directing between 80-93% annually to research programs.

We don’t think very much or often about the subject, do we? There is a lot of information on women’s health when it comes to the heart, the breast and reproductive matters. But women are disproportionately affected by problems related to aging of the brain, and it is still an elusive subject.

Project ALS it out to change that. 400 hundred women along with a smaller number of men, out on a Tuesday night to hear about health is impressive. There were three women – Judy Gold, Michelle Wolf and Gina Yashere – who stood up for the cause and rocked the room telling it like it is, with raucous laughter along with some wincing in equal measure. There was also Project ALS co-founder and Director of Research Valerie Estess, who provided insight on scientific research.

Judy Gold.
Gina Yashere.
Michelle Wolf.

Then there was Janet Riccio, a highly regarded media executive who was diagnosed with ALS last June, spoke about the very private unmentionable: living with the disease. There was stone silence as she related her experience. She also spoke of her optimism — for scientific breakthroughs to treat, and ultimately find a cure for ALS.

Janet Riccio, Dean of Omnicom University, spoke poignantly of her ALS diagnosis and her hope for a cure. ALS is a devastating neurodegenerative disease that, in addition to the closely related Parkinson’s and Alzheimer’s diseases, will affect 1 in 25 Americans by the year 2025, according to Project ALS.

ALS – amyotrophic lateral sclerosis, has always been known as Lou Gehrig’s disease. Lou Gehrig was a famous New York Yankees first baseman (17 seasons) through the 1920s and 1930s. An all-American sports hero, a good guy, he contracted a disease that was never spoken of publicly before — a progressive brain disease that affects motor neurons which are specialized nerve cells that control muscle movement.

Since then we have seen that it is not so uncommon, if still mysterious. Theoretical physicist, cosmologist and author Stephen Hawking, Hall of Fame pitcher Jim “Catfish” Hunter, Toto bassist Mike Porcaro, Senator Jacob Javits, actor David Niven, “Sesame Street” creator Jon Stone, boxing champion Ezzard Charles, NBA Hall of Fame basketball player George Yardley, former vice president of the United States Henry A. Wallace, and NFL football players Steve Gleason, O.J. Brigance and Tim Shaw all were afflicted with it.

Nancy Jarecki and Nina Griscom.

In ALS, motor neurons die (atrophy), leading to muscle weakness, a loss of muscle mass, and an inability to control movement. Over time, a person loses the ability to walk, speak, swallow and breathe.  ALS, which affects adults of all ages, from teens to seniors and cuts across racial, ethnic and socioeconomic lines, is usually fatal within 2-5 years of diagnosis.

Twenty years ago, ALS and neurodegenerative research was in its infancy.  Scientists and doctors were working mostly in isolation. There was little support.  Project ALS has changed this. Its leadership in research across the fields of stem cell biology, genetics, drug screening, and clinical trials in in more than 30 leading academic institutions has changed this.

Today, scientists are closer than ever to finding an effective treatment. They raised over $300,000 Tuesday evening. The funds will go to support ALS therapy research and a Medical School Neurology student scholarship at Columbia Medical School.

Among the guests Diane Max, Krista Krieger, Ashley McDermott, Nina Griscom, Nancy Jarecki, Ramy Sharp, Debbie Peltz, Debbie Wilpon, Rainey Miller, Crashy Brown Zacher, Robin Dracos, Gail Furman, Tara Spiegel, Melissa Spohler, Allison Lutnick and Erika Weinberg.

Debra Wasserman, Debbie Wilpon, and Project ALS chairperson, Marcie Fleck.
Ashley McDermott, Nancy Jarecki, and Nina Griscom.
Senior Master Instructor at SoulCycle, Stacey Griffith, whips the bidding to a frenzy. The auction raised in excess of $100,000, significantly surpassing a $40,000 goal. The evening’s grand total was over $300,000.



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