Songs in the Key of Steven Blier,

About the event

Benefit auction and concert to support the work of the FSH Society, raising critical funds for scientific research on facioscapulohumeral muscular dystrophy (FSHD). The concert will feature rising star Julia Bullock, winner of the 2014 Naumburg International Vocal Competition, performing an intimate and personal suite of songs with the acclaimed pianist STEVEN BLIER. Our inaugural concert in 2014 with opera legend Frederica von Stade, received rave reviews.Our 2015 concert will be held at the Marines' Memorial Club Hotel's Crystal Ballroom, known for its stunning chandeliers and elegant, old-world ambience. The evening begins with a wine reception and silent auction, followed by a sit-down dinner, live auction, musical performance and dessert. The event draws biotech and pharma executives, physicians, community leaders, members of the Board of the San Francisco Opera and other cultural leaders, as well as many patients and family members. The revenue generated will be used to fuel research by the world’s foremost researchers.The benefit concert features and honors Steven Blier, Juilliard pianist and co-founder of the New York Festival of Song. As a prized accompanist, Blier has performed with the world's pre-eminent singers, including Renee Fleming and Cecilia Bartoli. About Blier, New York Times columnist Joe Nocera has written: “Despite the toll (FSH) muscular dystrophy has taken on his body, (Steven) Blier considers himself, in some important ways, lucky. It did not target either his face or his forearms and hands, which remain supple and strong. He can still laugh his endearing laugh and play his beautiful piano — perhaps the two most important things in the world for him.” “Suffice it to say, he is one of the most extraordinary people I know.”Affecting more than 870,000 people worldwide, facioscapulohumeral muscular dystrophy (FSHD) is one of the most common muscle dystrophies. The genetic disorder presents a lifelong progressive loss of all skeletal muscles, typically attacking the muscles of the face (facio), shoulder blades (scapula) and arms (humerus), though it can progress to affect all skeletal muscles. The disease’s age of onset ranges from infancy to adulthood, with symptoms ranging from mildly to severely disabling and life-shortening. Approximately one-quarter to one-third of patients end up in wheelchairs. FSHD affects both sexes and all races and ethnicities equally. Currently there is no treatment.The FSH Society, founded in 1991 by two FSHD patients, is a world leader in combating muscular dystrophy. The non-profit has provided millions of dollars in seed grants to pioneering research worldwide, creating an international collaborative network of patients and researchers. The FSH Society serves as a source of information and support for all patients and families with FSHD; acts as a driving force in the development of research directed towards treatments and ultimately a cure; and brings support to patients and research for FSHD through effective engagement of governmental and private sector organizations and entities.Research launched by the FSH Society led to the discovery in 2010 of the genetic mechanism responsible for 95 percent of cases. A second genetic mutation was identified in 2012, and in 2013, the two genetic factors were found to interact. The disease mechanism involves epigenetic regulation of so-called “junk DNA”, and FSHD research is revolutionizing the scientific understanding of gene regulation, with profound implications for human health and disease.Building on these landmark discoveries, the FSH Society is leading an international advocacy and research effort by supporting biospecimen repositories, patient registries, biomarker and clinical endpoint consortiums and a clinical trial network. These efforts are beginning to attract the attention of biotechnology and pharmaceutical companies.For six consecutive years, the Society has received the Charity Navigator’s four-star rating, the highest distinction held by less than three percent of non-profit organizations in the country. The FSH Society offers a community of support, news and information for FSHD patients and families through its website at

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June Kinoshita

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