about the fsh society · melodia sentimental (heitor villa-lobos/dora vasconcelos) tú no sab’...

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Page 1: About the FSh Society · Melodia sentimental (Heitor Villa-Lobos/Dora Vasconcelos) Tú no sab’ inglé (Emilio Grenet/Nicolás Guillén) C’est ça la vie (from Toi, C’est Moi,
Page 2: About the FSh Society · Melodia sentimental (Heitor Villa-Lobos/Dora Vasconcelos) Tú no sab’ inglé (Emilio Grenet/Nicolás Guillén) C’est ça la vie (from Toi, C’est Moi,

About the FSh Society

Affecting more than 500,000 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. FSHD affects both sexes and all races and ethnicities equally. Currently there is no treatment.

The FSH Society (www.fshsociety.org), 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 bio specimen 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.

The FSH Society offers a community of support, news and information for FSHD patients and families through its website at http://www.fshsociety.org. For more information about FSHD, please contact the Society’s Executive Director, June Kinoshita, at 781-301-6649.

Concert proceeds benefit the FSH Society, a 501(c)(3) non-profit tax-exempt U.S. charity funding research on facioscapulohumeral muscular dystrophy (FSHD), a degenerative muscle disease affecting over 500,000 patients worldwide.

In 2014, the FSH Society received its sixth consecutive four-star award and was ranked among America’s “Ten Charities Worth Watching” by one of the nation’s leading charity watchdog organizations, Charity Navigator.

FSh Society SAn FrAnciSco concert committee

honorary chairs

Rita MorenoFrederica von Stade

co-chairs

Joyce HakanssonAnn O’Leary

host committee

Paula Birnbaum and Neil Solomon, M.D.Steven Blier and James S. Russell

Howard Chabner and Michele DeShaBetsy and Joe Conron

Steven DamronTodd Defren

Patricia DoktorBob Ellis

Shenly GlennJoyce and Nils Hakansson

Karen JewellBeth Johnston

Jacquelyn Kay-MillsJune Kinoshita and Tod Machover

Dione KobayashiBarbara and Richard Kweller

Jessica Levy GitelmanMarilyn Levinson

Duncan and William R. Lewis, M.D.William R. Lewis III, M.D.

Michelle and David MackayAnn and Bill O’Leary

Linda and Kevin StapletonMelanie Stauffer

Rhonda Von SchritzChristopher Wiseman

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WelcomeDear Friends,

Tonight, we assemble in this storied Jazz Club to experience the two-fold magic of music and philanthropy. Music stirs our emotions and joins us together in our common humanity, while philanthropy channels our care and concern for one another into action that changes lives.

The artists we are about to hear are among the brightest stars of the musical universe. Frederica von Stade is one of the truly legendary names in opera. Efrain Solis and María Valdés are dazzling young talents from the San Francisco Opera’s Merola Program. It’s our privilege to have these superb artists entertain and inspire us.

We are here to honor an exceptional musician and human being: Steven Blier. Steven happens to have FSH muscular dystrophy, the disease we are gathered here to fight. But it’s not FSHD that makes Steven worthy of our gratitude and admiration. It’s his commitment to sharing and celebrating the most exalted music, especially the music of the human voice. He is tireless in performing, coaching and sharing it. It’s not his FSHD that worries him, he jokes, but how he’s going to get through 18 concerts in the next few months.

“Muscular dystrophy is not something I would recommend,” Steven told New York Times columnist Joe Nocera. “But it is an amazing teacher. It shows you what you are made of. To live your life in a wheelchair, you have to man-up.”

These words apply equally well to our event co-chairs Ann O’Leary and Joyce Hakansson. They live with muscular dystrophy too, and they have “womanned up” magnificently. We cannot thank them enough, along with the Lewis Family and every member of our event and host committees. Without them, the event you are about to enjoy this evening could never have happened.

Thanks to years of hard work by volunteers, our staff and Board of Directors, and the generosity of our donors, the FSH Society has funded research leading to major breakthroughs: the discovery of two genetic errors that cause FSHD. These landmark findings are launching us into the era of drug discovery.

As we work hard to find treatments, your support also ensures that no patient need face this disease alone. The FSH Society is their beacon, the place to which they can turn for education, access to proper medical care, emotional support – and empowerment.

Thank you for joining us tonight and helping to make the magic happen.

Sincerely,

June Kinoshita, Executive Director Daniel Perez, President and CEO

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GreetinGs from the Co-Chairs

Welcome to the first major FSH Society fundraiser in the beautiful Bay Area. Thank you for being part of this momentous occasion – hopefully the first of many to come. This evening’s event is not only an opportunity to enjoy outstanding music and raise funds for the FSH Society, but also a catalyst for bringing the greater Bay Area FSH community closer. We frequently hear of people who feel very alone in the world with this frustrating disease and are at a loss as to where to turn. The Bay Area should not be that place. Not only do we have a strong community of FSHers, our family and friends - we also have world class hospitals and clinics leading the way in muscular dystrophy therapies and support. This is our opportunity to help make that community stronger.

Thank you to the fantastic performers, sponsors, donors, June and Doris, volunteers and all of you as guests. We hope you have a wonderful evening!

Best wishes,

ann o’Leary, co-chair

Thank you all for making this evening possible. Words cannot express our appreciation and gratitude for your generous donation of time, talent, hard work, and assets to meet the goal of eliminating this despicable disease. I can trace my link to FSH through five generations, and it probably went back further than that. Now, for the first time we are seeing real progress in identifying the cause of the disease and with the help, and generosity, of people like you, a treatment and a cure are a possibility. Then, future generations will not suffer the limitations and frustrations that so many have and are experiencing.

Joyce hakansson, co-chair

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a Letter from our hero sponsors – DunCan anD WiLLiam r. LeWis, m.D.

Dear Friends of the FSH Society:

Some of you may have noticed that this space was initially labeled or defined in the invitational RSVP card as being for the “FSHD Hero Title Sponsor”. We have embraced that terminology and wish to apply it more accurately and indeed more literally by focusing on the true heroes.

It is thus our privilege and opportunity to acknowledge and proclaim the real heroes of yesterday and today. Among these were those heroes present at the birth of the FSH Society and whose dedication and determination must be credited with laying the foundation for the increasingly mighty Society which we see today. There are many candidates but we wish to pay special tribute to the late Carol Perez (mother of Dan Perez), the late Steve Jacobsen, and the late Ed Schechter whose tireless dedication to the society at its inception deserves our boundless gratitude.

The list of heroes is long and growing as we show our appreciation and indebtedness to numerous organizers, Society Board and Scientific Advisory Board members, researchers, and our dedicated staff, along with many hundreds of donors and supporters such as those here tonight.

Finally, the most laudable heroes are the FSHD patients and caretakers who face each day with extraordinary courage, determination, and willpower as they struggle to maintain some degree of normalcy in lives marred by inexorable muscular weakness.

You who have joined us here tonight to support the efforts of the FSH Society include affected as well as unaffected heroes, each with somewhat different motives and desires but with the common and humane goal of finding a cure for the dreadful facioscapulohumeral dystrophy (FSHD). Your interest, concern, and generosity qualifies each of you as a special kind of hero.

Duncan B. Lewis

William r. Lewis, m.D., Board Chair of the fsh society

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sCheDuLe of eVents

“That moment of connection with me, my piano, the song, the lyrics, the singer, and audience — if you do it right, it is like a moon voyage,” he said. “The liftoff is incredible.”

– Steven Blier, from “The Man at the Piano” by Joe Nocera, The New York Times, May 10, 2013.

5:00-6:00 p.m.VIP Reception

6:00 p.m.Main Reception and Silent Auction

7:00 p.m.Please make your way into the Jazz Club and take your seats

7:15 p.m.Silent Auction Closes

7:30 p.m.Welcome from the Executive Director of the FSH Society, June Kinoshita

and Auctioneer, Liam Mayclem

7:50 p.m.Live Auction and Fund-a-Cure

8:30 p.m.Songs in the Key of Steven Blier, featuring Frederica von Stade

with Maria Valdez and Efraín Solís

9:30 p.m.Closing Comments, Dessert Reception, and Please Collect Your Auction Items

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the musiCaL proGram - “sonGs in the KeY of steVen BLier”

featuring frederica von stade with maria Valdez and efraín solís

An intimate musical journey drawn from the American Songbook, French popular song, and Latin-American music, plus a touch of Kurt Weill. These are “songs that have continually fueled my imagination and my heart,” says Blier.

frederica von stade

By Strauss (George and Ira Gershwin)

Bill (Jerome Kern/P. G. Wodehouse)

Je cherche un millionnaire (Herb Nacio Brown)

Everybody Loves You When You Sleep (Richard Rodgers and Lorenz Hart)

Amor (William Bolcom/Arnold Weinstein)

efraín solis, maría Valdés

El día que me quieras (Carlos Gardel)

Melodia sentimental (Heitor Villa-Lobos/Dora Vasconcelos)

Tú no sab’ inglé (Emilio Grenet/Nicolás Guillén)

C’est ça la vie (from Toi, C’est Moi, Moisés Simons/Henri Duvernois)

frederica von stade

La vie en rose (Marguerite Monnot/Louis Guglielmi, aka Louiguy/Piaf)

The Physician (Cole Porter)

the ensemble

Là ci darem la mano (from Don Giovanni, W. A. Mozart/Lorenzo da Ponte)

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aBout the artists

Photo credit: Robert Millard

frederica von stade

Frederica von Stade, one of the world’s most celebrated mezzo sopranos, has enriched the world of classical music for three decades with appearances in opera, concert and recital. The mezzo-soprano is well known to audiences around the world through her numerous featured appearances on television including several PBS specials and “Live from Lincoln Center” telecasts. She has made over sixty recordings with every major record label, including complete operas, aria albums, symphonic works, solo recital programs, and popular crossover albums. Her recordings have garnered six Grammy nominations, two Grand Prix du Disc awards, the Deutsche Schallplattenpreis, Italy’s Premio della Critica Discografica, and “Best of the Year” citations by Stereo Review and Opera News. Miss von Stade was awarded France’s highest honor in the arts when she was appointed an officer of L’Ordre des Arts et des Lettres, and in 1983 she was honored at The White House by President Reagan in recognition of her significant contribution to the arts.

“the amazing steven Blier,” by frederica von stade

I don’t think there’s anyone who sings or plays an instrument or loves music that doesn’t love Steve Blier. He is music in every part of his heart and soul and he has done nothing all his life but share his love and his expertise and his gift. He is Christmas and Birthdays and everything magic in performing, preparing, learning, researching and everything that we all aspire to.

This is a business where there is great and startling talent but he stands taller than anyone. I just love and admire him with all my heart and I’m one of a million that feel the same way.

We’re so grateful to everyone who has come to support Steven, who triumphs over his illness every day of his life to the point that one forgets the challenges he faces and has faced for so many years. He is a walking miracle of talent and courage.

“the man at the piano” by new York times op-ed Columnist, Joe nocera

…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.

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steven Blier

Steven Blier is the Artistic Director of the New York Festival of Song (NYFOS), which he co-founded in 1988 with Michael Barrett. Since the Festival’s inception, he has programmed, performed, translated and annotated more than 140 vocal recitals with repertoire spanning the entire range of American song, art song from Schubert to Szymanowski, and popular song from early vaudeville to Lennon-McCartney. NYFOS has also made in-depth explorations of music from Spain, Latin America, Scandinavia and Russia. New York Magazine gave NYFOS its award for Best Classical Programming, while Opera News proclaimed Blier “the coolest dude in town.”

Mr. Blier enjoys an eminent career as an accompanist and vocal coach. His recital partners have included Renée Fleming, Cecilia Bartoli, Samuel Ramey, Lorraine Hunt Lieberson, Susan Graham, Jessye Norman, and José van Dam, in venues ranging from Carnegie Hall to La Scala. He is also on the faculty of The Juilliard School and has been active in encouraging young recitalists at summer programs, including the Wolf Trap Opera Company, Santa Fe Opera, and the San Francisco Opera Center. Many of his former students, including Stephanie Blythe, Joseph Kaiser, Sasha Cooke, Paul Appleby, Dina Kuznetsova, Corinne Winters, and Kate Lindsey, have gone on to be valued recital colleagues and sought-after stars on the opera and concert stage.

In keeping the traditions of American music alive, he has brought back to the stage many of the rarely heard songs of George Gershwin, Harold Arlen, Kurt Weill and Cole Porter. He has also played ragtime, blues and stride piano evenings with John Musto. A champion of American art song, he has premiered works of John Corigliano, Paul Moravec, Ned Rorem, William Bolcom, Mark Adamo, John Musto, Richard Danielpour, Tobias Picker, Robert Beaser, Lowell Liebermann, Harold Meltzer, and Lee Hoiby, many of which were commissioned by NYFOS.

Mr. Blier’s extensive discography includes the premiere recording of Leonard Bernstein’s Arias and Barcarolles (Koch International), which won a Grammy Award. His latest CD, Canción amorosa, a disc of Spanish songs with soprano Corinne Winters on the GPR label, is scheduled for release in July of 2014. Recent CDs include Spanish Love Songs (Bridge Records), recorded live at the Caramoor International Music Festival with Lorraine Hunt Lieberson, Joseph Kaiser, and Michael Barrett; the world premiere recording of Bastianello (John Musto) and Lucrezia (William Bolcom), a double bill of one-act comic operas set to librettos by Mark Campbell; and Quiet Please, an album of jazz standards with vocalist Darius de Haas; His writings on opera have been featured in Opera News and the Yale Review. A native New Yorker, he received a Bachelor’s Degree with Honors in English Literature at Yale University, where he studied piano with Alexander Farkas. He completed his musical studies in New York with Martin Isepp and Paul Jacobs.

http://www.bridgerecords.com/products/quiet-please/

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merola opera program

Each summer, San Francisco becomes a place where dreams come true for the young artists in the Merola Opera Program. Merola is dedicated to seeking out the finest young opera talent and helping them develop into professional artists of the highest caliber. Approximately 23 singers, five apprentice coaches and one apprentice stage director are chosen to participate in the Program. The Merola Opera Program works in close collaboration with the San Francisco Opera Center and San Francisco Opera.

maria Valdes, soprano

Maria is a first-year Adler Fellow who recently appeared as Susanna in Merola Opera Program’s 2013 production of The Marriage of Figaro. An award-winner in the regional Metropolitan Opera National Council auditions, Valdes is also the winner of the top prize at the Corbett Opera Scholarship Competition at the Cincinnati College-Conservatory of Music. She has been heard in concert with ensembles including the Georgia State University Singers, the Atlanta Chamber Players, the Atlanta Sacred Chorale, the choirs of Emory University, Bent Frequency, and the Bellingham Festival of Music in Washington.

efraín solís, Baritone

Efraín is a first-year Adler Fellow. He has performed a variety of roles, including the title role of Eugene Onegin with Russian Opera Workshop in Philadelphia, Guglielmo in Così fan tutte, and Figaro in The Marriage of Figaro. At the San Francisco Conservatory of Music, he performed the title role of Don Giovanni, Guglielmo in Così fan tutte, and the title role of Gianni Schicchi. In the spring of 2013, he joined Opera Santa Barbara as a member of their Studio Artist Program where he sang the role of Il Notaio and covered Dr. Malatesta in Don Pasquale. As a participant of the 2013 Merola Opera Program, he sang Junius in The Rape of Lucretia and covered the Count in The Marriage of Figaro. Chosen as a finalist for the Metropolitan Opera National Council Auditions and the 2013 Houston Grand Opera’s Eleanor McCollum Competition, he holds a Bachelor of Music from Chapman University and a Master of Music from the San Francisco Conservatory of Music.

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thanK You to the Generous sponsors anD Donors of toniGht’s eVent

fshD hero title sponsor

Duncan and William R. Lewis, M.D.

Gold sponsors

Ray Miller M.D.

David Tunnell Family

Couple sponsors

Joe Conron and Betsy Lewis Conron

Jessica and Jeremy Gitelman

Joyce and Nils Hakansson

Deb and Kevin Hall

Roger and Satomi Miles

Kevin and Linda Stapleton

Gale Tunnell and Michael Raddie

additional Donors

Paula Birnbaum and Neil Solomon

Joan Coleman

Bob Ellis

Carolyn Hakansson Johnston and William Johnston

James and Betsy Hinson

Robert and Betty Humphreys

Alan Karras and David Schultz

Jeff Kennedy

Dr. John Mark and Ann Miya

Dan and Ellen Schumm

Dr. Marjorie Solomon and Mark Friedman

Abigail Wizansky

Mark Zitter

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aBout our auCtioneer – Liam maYCLem

Liam Mayclem is an Emmy Award winning Radio/TV personality known to Bay Area residents as the host of CBS 5’s Eye on the Bay and as “The Foodie Chap” on KCBS. The Irishman with an English accent is also a much in demand auctioneer and emcee.

Liam has helped raise millions of dollars for causes and organizations close to his heart including:

49ERS Foundation

Edible Schoolyard

Michael J. Fox Dream Foundation

Project Open Hand

SF & Marin County Food Banks

SFCASA

SF AIDS FOUNDATION

Share our Strength (NO KID HUNGRY)

… and tonight, the FSH Society.

When not broadcasting or hosting events Liam can be found enjoying local cuisine, music and theatre.

auCtion proCeDures anD reGuLationssilent auction Bidding procedure

1. The silent auction opens at 5:00 p.m. for VIP guests and 6:00 p.m. for all other guests. Guests will receive a bid number upon registration.

2. All silent auction categories will close by 7:15 p.m.

3. Item description and bid sheets are displayed near each item. The bidder is to place their bid number next to any pre-printed amount they wish to bid. The highest bidder wins the item. No bids will be accepted after the auction has closed.

4. Following the musical performance, the silent and live auction items will be ready for pickup in the reception area. Those who bid should check the winner’s display board before leaving.

Live auction Bidding procedure

1. The highest bidder acknowledged by the auctioneer will be the purchaser. In the event of any dispute, the auctioneer shall determine the successful bidder.

2. The auctioneer reserves the right to reject any bid that, in his opinion, is not commensurate with the value of the lot being offered.

auction rules and regulations

1. Unless otherwise specified, dates and times are to be arranged at the mutual convenience of the donor and the buyer.

2. Unless otherwise noted, restaurant gift certificates do not include alcohol, tax or gratuity.

3. All purchases are final. No exchanges or refunds on auction items.

4. Gift certificates are not redeemable for cash. Certificates are not valid if lost or stolen and cannot be combined with other promotions.

5. Values indicated on items are estimates only and are not warranted by the FSH Society for tax purposes or for general value. Your receipt includes a good-faith estimate of the value of the item offered for auction.

6. The charitable deduction for the purchase of items at the auction is limited to the amount, if any, by which the payment exceeds the fair market value of the item. Please consult your tax advisor.

7. At the time of the purchase, the buyer waives any claims for liability against either The FSH Society or the donor of property and services. Neither is responsible for any personal injuries or damages to property that may result from the utilization of property or services sold.

8. All auction items must be paid in full by cash, check or credit card.

9. Winning bidders are responsible for removing their items from the auction immediately after the event.

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the auCtion Donations

in-Kind Donors

Adventure Cat Sailing • American Conservatory Theater • Angélique de Paris

• Anonymous • Aquarium of the Bay • Aurora Theatre Company • Bay Area

Cabaret • Bay Area Discovery Museum • Bernardus Winery • Paula Birnbaum •

Burger Meister • Kathe Cairns • California Academy of Sciences • The California

Museum • Cardinal Estate • Sarah Carlson • Chabot Space & Science Center •

Charles Krug Winery • Christopher Creek Winery • Ray Combs & Mark Hugret •

The Commonwealth Club of California • Betsy Lewis Conron • Connie Cormier

• Dawn’s Dream Winery • diPietro Todd • Disney/ABC • Elite Island Resorts

• Elizabeth Spencer Winery • 54 Mint • Gilroy Gardens • Milton Glaser • Go

Car Tours • Golden State Warriors • Greens Restaurant • Carolyn Hakansson-

Johnston • Harrah’s Northern California • Heller Estate Organic Vineyards •

Hendry Winery • International Sports Management • Jackson Family Fine Wines •

Roswitha Kress • Lagunitas Brewing Company • Marilyn Levinson • Duncan & Bill

Lewis • Irma Lubbe • Magic Theatre • Marin Theatre Company • Liam Mayclem •

Rolf Merrihew • Jacquelyn & Robert Mills • Modern Sailing School & Club • Paul

Nebb • Pier 39 • Nico Ristorante • PinkCalyx.com • Power Lesson • Quixote

Winery • Ridge Vineyards • San Francisco Conservatory of Music • San Francisco

49ers • San Francisco Opera • San Francisco Playhouse • Seabass Vineyards &

Family Wines • Seghesio Family Vineyards • Leah Sheely • The Shotgun Players •

Sandra and Alan Silvestri • Solana Kai Designs • Sorrento Catering • Jolene & Bob

Spell • Sports Basement • Stanford Athletics • Linda Stapleton • 3 Steves Winery •

Terra Restaurant • Ventana Vineyards • Waits-Mast Family Cellars • The Walt Disney

Family Museum • Joseph Wollter • Christopher Wiseman & Eric Sleigh • Yoshi’s San

Francisco

The donors listed made in-kind pledges and donations before the program deadline, July 15, 2014.

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DonateD Wine anD time

Wines kindly donated and poured during our reception:

Dashe Cellars

Jackson Family Fine Wines – Kendall Jackson AVANT Chardonnay and La Crema Monterey Pinot Noir

for those who volunteered their time and services in support of tonight’s event:

Archive Productions, Scotty Peterson

Bay Area Cabaret (www.bayareacabaret.org)

Bridge Records

Christopher Wiseman Consulting

DesignDoktor.com, Patricia Doktor

DVpix.net, David Wong

Empire Promotional Products

Jessica Gitelman

Deb Hall

The Junior League of San Francisco

Barbara Kweller

Seth Kweller

Noa Machover

San Francisco Opera

Shift Communications

The Sisters of Perpetual Indulgence (Sister Bella de Ball, Sister Gina Tonic, The Sparkling Novice Sister Hera Sees Candy, Novice Sister Maddie Bout You)

Gale Tunnell

Lynn Unger

Joseph Wollter

Yoshi’s

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About the FSh Society

Affecting more than 500,000 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. FSHD affects both sexes and all races and ethnicities equally. Currently there is no treatment.

The FSH Society (www.fshsociety.org), 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 bio specimen 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.

The FSH Society offers a community of support, news and information for FSHD patients and families through its website at http://www.fshsociety.org. For more information about FSHD, please contact the Society’s Executive Director, June Kinoshita, at 781-301-6649.

FSH Society logo Concert proceeds benefit the FSH Society, a 501(c)(3) non-profit tax-exempt U.S. charity funding research on facioscapulohumeral muscular dystrophy (FSHD), a degenerative muscle disease affecting over 500,000 patients worldwide.

CHARITY NAVIGATOR FOUR STAR CHARITY LOGO In 2014, the FSH Society received its sixth consecutive four-star award and was ranked among America’s “Ten Charities Worth Watching” by one of the nation’s leading charity watchdog organizations, Charity Navigator.

FSh Society SAn FrAnciSco concert committee

honorary chairs

Rita Moreno

Frederica von Stade

co-chairs

Joyce Hakansson

Ann O’Leary

host committee

Paula Birnbaum and Neil Solomon, M.D.

Steven Blier and James S. Russell

Howard Chabner and Michele DeSha

Betsy and Joe Conron

Steven Damron

Todd Defren

Patricia Doktor

Bob Ellis

Shenly Glenn

Joyce and Nils Hakansson

Karen Jewell

Beth Johnston

Jacquelyn Kay-Mills

June Kinoshita and Tod Machover

Dione Kobayashi

Barbara and Richard Kweller

Jessica Levy Gitelman

Marilyn Levinson

Duncan and William R. Lewis, M.D.

William R. Lewis III, M.D.

Michelle and David Mackay

Ann and Bill O’Leary

Linda and Kevin Stapleton

Melanie Stauffer

Rhonda Von Schritz

Christopher Wiseman

Page 16: About the FSh Society · Melodia sentimental (Heitor Villa-Lobos/Dora Vasconcelos) Tú no sab’ inglé (Emilio Grenet/Nicolás Guillén) C’est ça la vie (from Toi, C’est Moi,