Project Grant History

In reverse chronological order

#
Validating cfDNA biomarker
Nov 1, 2024 to May 1, 2025
University of Colorado
$45,267
Research - Basic
#
Development of FSHD Disease Progression Model
Jul 29, 2024 to Sep 10, 2024
Springbok Analytics
$20,000
Research - Basic
#
Generating a 3D spatially patterned FSHD tissue construct for disease modeling and therapeutic strategies using suspended tissue open microfluidic patterning (STOMP)
Jul 1, 2024 to Jun 30, 2026
University of Washington
$14,087
Research - Basic
#
A silencing reporter system to discover factors and pathways implicated in D4Z4 repression in Facioscapulohumeral dystrophy
Jul 1, 2024 to Jun 30, 2025
Fred Hutchinson Cancer Center
$14,087
Research - Basic
#
Validation of extracellular vesicle-associated circulating biomarkers for FSHD in cross-sectional and longitudinal clinical studies
Jul 1, 2024 to Jun 30, 2025
Nationwide Children's Hospital
$113,698
Research - Basic
#
TF-Scan Pilot Study
Jun 10, 2024 to Sep 3, 2024

$15,400
Research - Basic
#
FSHD Blood Biomarker Development
Jun 1, 2024 to May 31, 2025
University of Washington
$99,939
Research - Basic
#
Collaborative Effort to Evaluate a Novel Treatment Paradigm for FSHD Using EB-ON Technology
May 1, 2024 to Apr 30, 2025
Saint Louis University
$152,449
Research - Basic
#
The role of macrophages in Facioscapulohumeral muscular dystrophy
May 1, 2024 to Apr 30, 2025
University of Nevada
$99,372
Research - Basic
#
Mapping Facioscapulohumeral muscular dystrophy through single nuclei RNA sequencing
May 1, 2024 to Oct 31, 2025
John Walton Muscular Dystrophy Research Centre
$109,387
Research - Basic
#
Kennedy Krieger Institute Data-Lake Expansion - FlexFund
Nov 1, 2023 to Jul 1, 2024
Springbok Analytics
$70,000
Research - Basic
#
Mini-Pig Atlas Development
Oct 17, 2023 to Apr 17, 2024
Springbok Analytics
$50,000
Research - Basic
#
Exploring the interaction between mitochondrial dynamics and autophagy: can we counteract accumulation of dysfunctional mitochondria in FSHD muscle?
Oct 2, 2023 to Oct 17, 2025
King's College London
$195,783
Research - Basic
#
Uncovering the genetic drivers and suppressors of DUX4 in FSHD
Sep 15, 2023 to Sep 14, 2024
Saint Louis University
$30,000
Research - Basic
#
Understanding global genetic diversity in FSHD and building international trial readiness
Jun 1, 2023 to Nov 30, 2024
National Hospital for Neurology and Neurosurgery and University College London
$96,800
Research - Clinical
#
Molecular Markers of FSHD
May 1, 2023 to Apr 30, 2026
Fred Hutchinson Cancer Research Center
$492,000
Research - Basic
#
Building an MRI data-lake: the potential of individual muscle quantification and data aggregation to refine biomarker understandings in FSHD
Mar 1, 2023 to Feb 29, 2024
Seattle Children's Hospital
$167,500
Research - Basic
#
An in-silico approach to understanding DUX4 expression
Nov 1, 2022 to Oct 31, 2023
University of Bath
$5,574
Research - Basic
#
Consequence of human satellite II repeat expression in FSHD
Nov 1, 2022 to Oct 31, 2024
Fred Hutchinson Cancer Center
$150,000
Research - Basic
#
Determining in vitro and in vivo efficacy of novel DUX4 inhibitors
Nov 1, 2021 to May 1, 2022
Altay Therapeutics Inc
$137,045
Research - Translational
#
FlexFund - Epigenetic Analysis and FSHD Research Testing
Sep 23, 2021 to Sep 22, 2022
University of Nevada, Reno
$20,000
Research - Clinical
#
Generation of a craniofacial muscle model of FSHD
Jul 17, 2021 to Jul 16, 2022
University of Massachusetts Medical School
$20,000
Research - Basic
#
Novel Therapeutics for FSHD: Mitochondria-targeted Antioxidants
Jul 1, 2021 to Jan 1, 2024
King's College London
$61,088
Research - Translational
#
Tongue electro-impedance myography: a window into FSHD
Jun 1, 2021 to Jun 30, 2022
University of Utah
$50,000
Research - Clinical
#
Testing the effects of antifibrotic drugs on an FSHD mouse model and FSHD fibroadipoprogenitors: the first step toward antifibrotic therapy for FSHD
May 15, 2021 to Aug 31, 2022
University of Minnesota
$76,000
Research - Translational
#
The discovery of a novel small molecule inhibitor for DUX4
May 15, 2021 to Nov 14, 2021
Altay Therapeutics Inc
$85,000
Research - Translational
#
Development of a novel measurement tool of oral strength in FSHD
Oct 1, 2020 to Mar 4, 2021
University of Washington
$1,100
Research - Clinical
#
Development of novel DUX4-targeted miR-675- based therapies for FSHD
Aug 1, 2020 to Jul 31, 2021
Abigail Wexner Research Institute at Nationwide Children's Hospital
$96,221
Research - Translational
#
DUX4 mRNA silencing using RNA editing by CRISPR-Cas13-ADAR2 and endogenous ADAR
Aug 1, 2020 to Jul 31, 2021
Nationwide Children's Hospital
$99,106
Research - Translational
#
Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD)
Jul 10, 2020 to Jul 31, 2025
University of Kansas Medical Center
$327,145
Research - Clinical
#
DUX4-induced mechanisms contributing to FSHD pathogenesis
Jun 1, 2020 to May 31, 2021
Fred Hutchinson Cancer Research Center
$52,979
Research - Basic
#
FlexFund: Clinical Trial Support at University of Washington
Apr 13, 2020 to Apr 12, 2021
University of Washington
$20,000
Research - Clinical
#
Molecular Mechanism of p38 Kinase-mediated inhibition of DUX4 Gene in Facioscapulohumeral Muscular Dystrophy
Mar 1, 2020 to Feb 28, 2022
Saint Louis University
$130,465
Research - Basic
#
Improved, accessible, and affordable FSHD diagnostics
Feb 16, 2020 to Feb 15, 2021
University of Nevada, Reno
$41,512
Research - Clinical
#
Deciphering the role of aberrant protein synthesis in FSHD
Feb 1, 2020 to Jan 31, 2022
Department of Biochemistry and Molecular Genetics; RNA Bioscience Initiative University of Colorado, Anschutz Medical Campus
$197,753
Research - Basic
#
SLC34A2 as a Biomarker for FSHD
Jan 1, 2020 to Dec 31, 2020
University of Maryland
$18,770
Research - Clinical
#
Screening of FDA-approved compounds with DUX4-inhibitory potential in a FSHD mouse model
Dec 1, 2019 to Mar 31, 2021
Yale University
$60,000
Research - Translational
#
Antisense Oligonucleotide-Antibody Conjugates to Treat FSHD
Nov 1, 2019 to Oct 31, 2020
miRecule, Inc.
$70,000
Research - Translational
#
Walk & Roll Event Sponsorship
Oct 6, 2019 to Oct 6, 2019
FSHD Society
$1,500
Event
#
Wellstone FSHD Fellowship
Jun 1, 2019 to May 31, 2020
Fred Hutchinson Cancer Research Center
$60,830
Research - Basic
#
CTRN Evaluator Training
May 27, 2019 to May 26, 2020
University of Kansas Medical Center
$21,500
Research - Clinical
#
DUX4 mRNA silencing using CRISPR-Cas13
Mar 22, 2019 to Mar 21, 2021
Center for Gene Therapy, The Research Institute at Nationwide Children’s Hospital
$142,110
Research - Basic
#
Base editing of DUX4 somatic polyadenylation signal – towards new therapeutics for FSHD
Mar 19, 2019 to Mar 18, 2021
Leiden University Medical Centre
$100,000
Research - Basic
#
Young Investigator Travel Grant
Mar 19, 2019 to Mar 19, 2019
FSHD Society
$2,500
Travel
#
In vivo model to validate drugs targeting DUX4 enhancer/promoter activity
Mar 18, 2019 to Mar 17, 2021
University of Nevada, Reno School of Medicine
$95,062
Research - Translational
#
Travel Reimbursement for Clinical Study Participants
Jan 7, 2019 to Jul 31, 2026
University of Minnesota
$10,000
Research - Clinical
#
Deciphering the role of aberrant protein synthesis in FSHD
May 31, 2018 to May 30, 2019
Department of Biochemistry and Molecular Genetics; RNA Bioscience Initiative University of Colorado, Anschutz Medical Campus
$99,201
Research - Basic
#
Intramuscular pattern of fat infiltration in FSHD measured by MRI: towards identification of disease initiation and progression and improved diagnosis of disease severity
May 7, 2018 to Dec 6, 2018
Radboud University Nijmegen Medical Center
$57,047
Research - Clinical
#
Regulation and activity of the DUX4 transcription factor
May 7, 2018 to May 6, 2022
Fred Hutchinson Cancer Research Center
$325,770
Research - Basic
#
Identify Biomarkers for FSHD Using Omics Approaches
May 7, 2018 to May 6, 2019
Children's Research Institute
$97,734
Research - Clinical
#
Mechanisms of DUX4-induced muscle atrophy
May 1, 2018 to Apr 30, 2019
Boston University School of Medicine, Department of Neurology
$73,108
Research - Basic
#
Understanding the initiation and progression of FSHD-1 disease by use of the novel technology called single cell transcriptomics
Apr 9, 2018 to Apr 8, 2020
Boston Children Hospital
$50,000
Research - Basic
#
Exploring mechanisms of myopathology in FSHD
Jan 29, 2018 to Jan 28, 2019
University of Minnesota
$50,000
Research - Basic
#
CTRN International Sites
Jan 18, 2018 to Mar 1, 2021
University of Rochester
$100,000
Research - Clinical
#
Defining the role of post-translational modification on FSHD protein DUX4
Jun 19, 2017 to Jun 18, 2019
The Research Institute at Nationwide Children’s Hospital
$75,136
Research - Basic
#
A Xenograft Model of FSHD for Testing Therapeutics
Jun 14, 2017 to Jun 13, 2019
University of Maryland
$100,000
Research - Translational
#
Utilization of cell-free DNA (cfDNA) as a sensitive biomarker for clinical trial end point for individuals with FSHD
May 28, 2017 to May 27, 2018
Bristol Myers Squibb
$96,309
Research - Clinical
#
Investigation of a third generation oligonucleotide targeting DUX4 using a new mouse model of FSHD
May 13, 2017 to May 12, 2018
Children's Research Institute
$78,798
Research - Translational
#
Histochemical and morphometric analysis of FSHD biceps
Oct 25, 2016 to Oct 24, 2017
La Roche
$77,604
Research - Clinical
#
A cell culture model of innate immunity for FSHD
Oct 23, 2016 to Oct 22, 2017
University of Massachusetts Medical School
$32,090
Research - Basic
#
Clinical Study using MRI to measure immune response
Oct 10, 2016 to Oct 9, 2018
University of Washington
$52,765
Research - Clinical
#
ENMC Conference Travel Grants
Aug 31, 2016 to Aug 31, 2016
Office of Population Health Genomics
$4,500
Travel
#
Optimizing the Utility of the National Registry for FSHD Research and Trial Recruitment
May 16, 2016 to May 15, 2022
University of Rochester
$34,832
Research - Clinical
#
Quantitative Muscle Assessment System
May 12, 2016 to May 12, 2016
University of Washington
$16,500
Research - Clinical
#
Structural studies of DUX4-DNA interaction
Mar 1, 2016 to Sep 13, 2017
University of Minnesota
$65,401
Research - Basic
#
Portland FSHD Summit
Feb 29, 2016 to Mar 1, 2016

$32,325
Conference
#
Linking genotype to phenotype in human FSHD muscle biopsies and mouse muscle expressing DUX4 protein
Nov 1, 2015 to Oct 31, 2016
University of Washington
$57,377
Research - Basic
#
FSHD-Research in the Classroom Curriculum
Sep 1, 2015 to Aug 31, 2016
Heritage University
$4,000
Research - Clinical
#
RNA-mediated Epigenetic Silencing of D4Z4 repeats: Implications for targeted therapy for FSHD
Jul 1, 2015 to Jun 30, 2016
Fred Hutchinson Cancer Research Center
$60,180
Research - Basic
#
Validation of a PPMO morpholino lead compound in an animal model of FSHD
Jun 1, 2015 to May 31, 2016
Nationwide Children's Hospital
$50,000
Research - Translational
#
Investigation of DUX4 activity during development of hESC-derived skeletal muscle
May 1, 2015 to Apr 30, 2016
Genea Biocells
$50,000
Research - Translational
#
FSHD myofibers cultured from human xenografts
May 1, 2015 to Apr 30, 2017
University of Maryland
$100,000
Research - Translational
#
Optimizing expansion of human muscle stem cells for transplant into mice
Jan 1, 2015 to Jun 30, 2017
Fred Hutchinson Cancer Research Center and University of Washington
$100,000
Research - Translational
#
Crystallization of DUX4 for Structure Analysis
Jan 1, 2015 to Jun 30, 2015
University of Minnesota
$33,397
Research - Basic
#
Testing Molecular Antagonists of DUX4 3' End Formation
Jan 1, 2015 to Dec 31, 2016
Sealy Center for Structural Biology and Molecular Biophysics
$100,000
Research - Translational
#
Identification of Serum Biomarkers for Measurement of FSHD Progression
Jun 1, 2014 to May 31, 2016
University of Washington
$88,966
Research - Clinical
#
Cyclic peptides inhibitors of DUX4
Jun 1, 2014 to May 31, 2015
University of Minnesota
$50,000
Research - Translational
#
In-situ Muscle Test System FLEX Grant
Apr 10, 2014 to Apr 10, 2014
Leiden University
$7,500
Research - Translational
#
Generating FSHD‐affected human muscle in mice for testing therapeutic strategies
Dec 1, 2013 to Nov 30, 2014
Fred Hutchinson Cancer Research Center and University of Washington
$39,930
Research - Translational
#
Screening Chromatin Modifying Genes
Aug 16, 2013 to Aug 15, 2014
University of Washington
$42,160
Research - Basic
#
Identification of small RNAs generated from the D4Z4 Array
Aug 9, 2013 to Aug 8, 2014
Fred Hutchinson Cancer Research Center
$30,000
Research - Basic
#
Identification of Chromatin Modifier Genes Important for DUX4 Silencing
Aug 9, 2013 to Aug 8, 2014
University of Washington
$50,000
Research - Basic
#
Targeting epigenetic silencing of the 4qD4Z4 repeat array in FSHD
Jul 1, 2013 to Jun 30, 2015
Fred Hutchinson Cancer Research Center
$100,000
Research - Basic
#
UStream Pro Starter
Jun 4, 2013 to Jun 3, 2014
FSHD Society
$1,188
Event
#
Preventing DUX4 Activation and Apoptosis in FSHD Myotubes
Feb 20, 2013 to Feb 19, 2015
Histone Therapeutics
$84,453
Research - Basic
#
Modulators of Epigenetic Disease
Nov 25, 2011 to Nov 24, 2015
Fred Hutchinson Cancer Research Center
$500,000
Research - Basic
#
Longitudinal Progression of Edema and Fatty Replacement of Lower Extremity Muscles in FSHD
Nov 18, 2011 to Nov 17, 2012
Seattle Children's Hospital
$36,000
Research - Clinical
#
Development of anti-DUX4 therapeutics for FSHD
Oct 21, 2011 to Oct 20, 2013
University of Minnesota
$25,000
Research - Translational
#
Postnatal modeling of FSHD in mice
Sep 1, 2011 to Aug 31, 2013
University of Washington
$145,000
Research - Translational
#
Platform development and candidate drug screening for FSHD
Aug 18, 2011 to Aug 17, 2013
University of Washington
$121,500
Research - Translational
#
Mechanism of Wnt Signaling in Facioscapulohumeral Muscular Dystrophy
Apr 15, 2011 to Apr 14, 2013
Histone Therapeutics
$100,000
Research - Basic
#
Using model organisms to identify new therapies and understand the pathogenesis of Facioscapulohumeral Muscular Dystrophy
Nov 1, 2010 to Oct 31, 2012
Fred Hutchinson Cancer Research Center
$100,000
Research - Basic
#
RNA Interference as an investigative & therapeutic tool for FSHD
Apr 6, 2010 to Apr 5, 2012
University of Washington
$100,000
Research - Translational
#
Finalizing a unifying model of FSHD: genetic, transcriptional, and developmental aspects
Sep 15, 2009 to Jan 31, 2010
Fred Hutchinson Cancer Research Center
$150,000
Research - Basic
#
Development of an RNAi-based therapy for FSHD
Jun 9, 2009 to Sep 1, 2009
University of Washington
$100,000
Research - Translational
#
DUX4 and D4Z4 RNA and protein production as candidates for FSHD
Aug 15, 2008 to Aug 14, 2010
Fred Hutchinson Cancer Research Center
$100,000
Research - Basic
#
MR Evaluation of Skeletal Muscles
Aug 15, 2008 to Aug 14, 2009
Seattle Children's Hospital
$15,690
Research - Clinical
#
D4Z4/DUX4 Induced Pathologies in Mice
Aug 1, 2008 to Jul 31, 2010
University of Minnesota
$100,000
Research - Basic
#
Analysis of allele-specific RNA transcription in FSHD
May 29, 2008 to May 28, 2009
UC Irvine School of Physical Sciences
$28,000
Research - Basic
#
DUX4 expression in FSHD skeletal muscle
Jun 28, 2007 to Jun 27, 2008
Université de Mons
$14,845
Research - Basic
#
FSH Research Seattle Conference
Dec 1, 2006 to Dec 1, 2006

$2,517
Conference
#
FSHD Related Defects in Human Myogenesis
Jun 14, 2006 to Sep 13, 2008
University of Washington
$100,000
Research - Basic
#
Effects of FRG1 on muscle behavior
Oct 1, 2005 to Sep 30, 2008
Buck Institute for Research on Aging
$150,000
Research - Basic

Total investment to date: $8,395,852

This total represents all funds expended on the above listed grants, some of which have been co-funded by other organizations, creating a larger impact with our donor's funds. A complete list of our partners and co-funding is available on the Funding Partners page. There you will find how much we have been able to further stretch your generous donations to finding a cure.