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OUR PURPOSE

The FSH Society is a nonprofit, patient-driven organization supporting research and education for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy. Progress on FSHD could benefit a wide range of other areas of medicine, from cancer and diabetes to muscle regeneration and repair. We help patients and families through education and outreach; fund scientific research that is rigorously reviewed by our world-class Scientific Advisory Board; and advocate for increased government and industry investment in research and therapy development.

As long as we are here, no patient need ever face this disease alone. And with generous donations from patients, families, friends, major donors, and sponsors, the FSH Society will keep working to accelerate research leading to treatments.

Our Vision: To deliver treatments and a cure for FSH muscular dystrophy.

OUR ACHIEVEMENTS

The FSH Society established an FSHD research program at a time when none existed, by recruiting scientists and advocating for FSHD research. The Society has funded over $6.85 million in research grants, which have been leveraged to over $94 million in funding from the National Institutes of Health and other organizations. Our efforts have resulted in:

  • passage of the MD-CARE Act mandating federal action on all muscular dystrophies
  • the discovery of the genetic causes of FSHD
  • understanding of how the genetic defects lead to expression of a toxic gene
  • high-throughput drug screening to identify potential treatments
  • the development of FSHD animal models
  • induced pluripotent stem cell lines for drug screening and gene therapy
  • applications of genomic engineering aimed at blocking the genetic defect in FSHD
  • the development of biomarkers, imaging markers and clinical trial endpoints
  • publication in 2015 of the first evidence-based FSHD care guideline.

Research initiated by the FSH Society led to the discovery of a specific genetic “package” called DUX4 associated with FSHD. An international team discovered a second gene, SMCHD1, that causes FSHD Type 2.

CELEBRITY

  • Adriana McPhee
  • Bill Walton
  • Brian Goodell
  • Christopher Knight
  • Florence LaRue
  • Kelly O’Hara
  • Kim Alexis
  • Lydia Cornell
  • Max Adler
  • Mia St. John
  • Michael Orland
  • Micky Dolenz
  • Obba Babatunde
  • Pat McCormick
  • Peisha McPhee
  • Richard Karn
  • Rita Moreno
  • Sean Astin
  • Stefanie Schaeffer
  • Wendy Liebman

INDIVIDUAL

  • Alison Korman & Kamran Izadpanah
  • Anna Kula
  • Barbara McGee
  • Barbara Olinger
  • Betsy & Joe Conron
  • Brian Goodell
  • Chareen & Drew Kossoff
  • Cindy Percz
  • David Garden
  • Diane S. Rennell
  • Donna Moussalli
  • Ellen & Jeff Rennell
  • Ellen Levy
  • Gail Smith
  • Garrett Leight
  • Jack & Jan Solomon
  • Jacqueline Kates
  • Jeff Shulman
  • June Kinoshita & Tod Machover
  • Laurie Heyman
  • Leigh Ramos-Platt, MD
  • Lesley McCave
  • Loren & Alice Jackson
  • Margo Perez
  • Marla & Wesley Strick
  • Mia St. John
  • Michelle Lindgren
  • Mimi & Carlos Garcia
  • Nadja Hoyer-Booth
  • Patricia Doktor & Barry Jackson
  • Rachael Yura
  • Sasha Markgraf
  • Selina & Russell Lai
  • Sharon Hall
  • Stephen O'Connor
  • Susan, Steve & James Rice
  • Timothy Jordan

CORPORATE

  • aTyr Pharma
  • Abundance Foundation
  • Alan Brown, NFL Films
  • American Eagle Outfitters
  • Angels Baseball
  • Anson Calder
  • Piano Trax/Thomas Griep
  • Brent's Deli
  • Burke Williams Spa, Pasadena, CA
  • Café Laurent
  • Castelli's Ristorante
  • Chateau Marmont/Dean Yasharian
  • Circle Bar B Guest Ranch
  • Comedy & Magic Club
  • Comedy Sportz
  • Conundrum Productions
  • Core Foods
  • Dennis Bolton Printing
  • Domenico's Italian Restaurant
  • Dot Studio Pro/Phoenix Gonzalez, Matt Luckey
  • Dr. Phil Show
  • Evelyn Halus Vocal Coach
  • Friends of FSH Society
  • Golf N' Stuff
  • Griff Entertainment/Maria Calabrese, Ron Ward
  • Handcrafted Portraits
  • In-N-Out Burger
  • Inn at Playa del Rey
  • JW Marriott Chicago
  • Junket Productions, Inc./Todd Turner
  • La Mirada Theatre for the Performing Arts
  • Lazy Dog Cafe
  • Le Vigne Winery
  • LCS Inc./Matthew McCracken
  • Light Shapes/Kevin Mulvey
  • Long Beach Symphony Orchestra
  • Mailey Properties
  • Marquis Digital Media
  • Maui Jim
  • Medieval Times
  • Miracle Springs Resort & Spa
  • Museum of Tolerance
  • Napa Valley Wine Train
  • Original Tommy's World Famous Hamburgers
  • Pacific Battleship Center
  • Pacific Park
  • Pala Casino Spa Resort
  • RBRW.ORG/Jacquelyn Aluotto
  • Sage Vegan Bistro
  • Sea Glass Fine Art Photography
  • SET Artist Management/Marshall Weinstein
  • Shift Communications
  • Sky High Sports
  • Soaptopia
  • Spirit Cruises
  • Staples Center
  • Stonefire Grill
  • Suzanne Phillips PR & Social Media
  • Tahoe Donner Association
  • The Gourmandise School of Sweets & Savories
  • The Original Guiliano's Deli, Gardena, CA
  • Thomas Fallon Photography
  • Tori Kobayashi Photography
  • USS Midway Museum
  • Van Horn Wells Fargo Advisors
  • Western Digital Foundation
  • Wheel of Fortune
  • Wilshire LaPeer Pharmacy

Griff Entertainment, LLC empowers clients from the inception of their content through distribution. Griff produces and manages all creative, distribution and monetization aspects of its programming, each on their own branded channels.

Griff’s multi platform network offers a global consumer video destination available on multiple browsers including Roku, IOS and Android spotlighting premium video channels. Griff is honored to offer FSH’s own channel providing FSH’s global audience access to FSH content and events otherwise not available.

Griff Entertainment offers content creators true video monetization solutions through a unique multi platform network that distributes and syndicates content that says something, not just makes noise!

Maria Calabrese, J.D. former CEO/Founder, MC Squared Entertainment and Ronnie Ward, former President Merv Griffin Entertainment, Co-Chair the Griffin Group have combined over a half century of entertainment industry experience including law, management, marketing and traditional tv/film production to form Griff Entertainment with one focus . . . to drive audience migration for online content creators who want to maximize their profitability and branch across all media.

www.griffentertainment.com


At Junket Productions, Inc. (JPI) we create effective, engaging press material. From Press Junket scheduling to Set Design to Sound Mixing, our full-service team works around the clock - around the globe! - to produce your next Electronic Press Kit (EPK), DVD Added-Value, Media Set Visit or Satellite Media Tour (SMT).

Domestic or International, no location is too difficult or too remote. To maintain our reputation among the major studios, we’ve built a vast network of creative professionals on both Coasts as well as an excellent rapport with “junket-friendly” hotels in LA and NYC. Whether in a remote castle in the French Riviera or the shores of a raging Montana river, we’ve got you covered.

www.junketproductions.com


Figment LLC is headed by founder Barry E. Jackson and Patricia Doktor. Figment has provided production and/or concept design on many beloved animated features including “Nightmare Before Christmas”, “Shrek”, “Horton Hears a Who”, Ron Howard’s “The Grinch”, “Escape from Planet Earth”, and “The Ant Bully”. Figment’s work has received critical acclaim for “Firebreather” (Annie Award Nomination and Telly Award Win), for the animated short “Los Gringo”, for “Killer Buzz”, and for the current animated hit, “Sausage Party”.

Figment’s Barry E. Jackson also authored and illustrated the children’s book Danny DiamondBack, published by Harper Collins. Danny Diamondback is now a fully-funded feature film project, for which Figment will serve as Production Designer.

https://jacksondok.myportfolio.com

SCORE A PAIR OF

SUPER BOWL TICKETS!!!

Bid to help FSH!

The FSH Society has been awarded Charity Navigator's Four-Star Award for the eighth consecutive year, ranking it among the top 2 percent of U.S. charities for exceptional fiscal performance and transparency. 87% of every dollar raised goes directly to programs serving FSHD patients and research.