PROJECTS
The funds received through Ryan's Quest are directed, in full, to Duchenne muscular dystrophy research. Ryan's Quest bases all decisions regarding the awarding of funds to research projects, after the project is submitted through a rigorous and transparent review process.
We also collaborate with other non-profit organizations which have similar goals to that of Ryan's Quest concerning current and promising advances being made in Duchenne research. These organizations also have scientific advisors who specialize in the field of DMD to determine the validity and potential of a given project.
Ryan’s Quest Policy on Donated Funds-Ryan’s Quest, Inc. contributes 100% of proceeds for programs, grants, and projects that support its mission to provide and appropriate funds that benefit the community for which it serves. Funds are not to be used for institutional, administrative, overhead, or indirect costs, only direct patient care or research. Ryan's Quest does not support tuition or other education related fees.
Total funding to date
$2,709,975
Collaboration grant with Charley's Fund to focus on four initiatives.
$147,333
1-A collaborative effort to improve the “gateway to the
clinic.” Brings together experts to optimize preclinical models and methods to
better predict which treatments will benefit patients.
2- A novel outcome measure using video scales designed to measure quality of
movement in patients with DMD. The tool is being refined and vetted for use in
clinical trials.
3-Electrical Impedance Myography- A hand-held device that measures muscle
integrity using electrical signals. The device is being optimized and vetted for use
as an outcome measure in DMD clinical trials.
4- A potential clinical study that uses video scales
and EIM in patients initiating steroid treatment to help evaluate the two measures’
sensitivity to treatment effect.
Osteoprotegerin Validation
$105,370
Validate muscle protection effect of osteoprotegerin (OPG) in the MDX model of Duchenne muscular dystrophy
University of Missouri | Dongsheng Duan Ph.D., Program Director
"Shifting Burden of Disease Study"
$10,000
This project will help accelerate drug development in Duchenne and help patients and caregivers communicate the most burdensome aspects of their disease and how it affects their daily lives in a rigorous and quantitative manner.
Jett Foundation
Montelukast as Potential Therapy for Duchenne Muscular Dystrophy
$50,000
Evaluation of the anti-inflammatory drug montelukast as a potential therapy for Duchenne Muscular Dystrophy
University of Missouri | Dongsheng Duan Ph.D., Program Director
Kennedy Krieger Institute’s Center for Genetic Muscle Disorders
$37,500
Screening of small molecules and drugs from the Johns Hopkins Clinical Compound Library, using human myoblasts derived from iPSCs from patients with Duchenne.
Kennedy Krieger Institute | Kathryn Wagner M.D, Ph.D | Gabsang Lee Ph.D.
Osteoprotegerin (OPG)
$255,000
Drug development support for Osteoprotegerin (OPG) for treatment of Duchenne muscular dystrophy.
DMD Therapeutics
Combination Studies of Quercetin & Nicotinamide Riboside
$110,000
with a Steroid and Ace Inhibitor
Iowa State University || University of Montana
Joshua Selsby PhD || John Quindry PhD
Osteoprotegerin (OPG)
$330,000
Preclinical studies to determine the effect of osteoprotogerin, alone or in combination with beta agonists or glucocorticoids, on muscle health in models of Duchenne muscular dystrophy
University of Laval Quebec, Canada | Jerome Frenette Ph.D
Boston Children's Hospital/Harvard Medical School
$220,000
Screening of several commonly used and safe serotonin modulators to determine their ability to prevent and correct muscle degeneration which the goal to identify the best candidate and to bring to a clinical trial in boys with Duchenne.
Dr Louis Kunkel (co-discovered the mutation that causes Duchenne)
Support for TREAT-NMD Advisory Committee for Therapeutics (TACT)
$10,000
Support for TREAT-NMD Advisory Committee for Therapeutics (TACT)
Clinical Trial Research Personnel
$10,000
Mass General Hospital for Children
Brian Tseng MD/PhD
Biglycan (Utrophin Upregulator)
$50,000
Brown University/PPMD
Justin Fallon PhD
CombinatoRx-Compound Screen
$50,000
Charley's Fund
CombinatoRx
Project Catalyst
$40,000
University of Pennsylvania/PPMD
Lee Sweeney PhD
Osteopontin (Anti-fibrotic)
$25,000
UCLA/PPMD
Melissa Spencer PhD
Clinical Outcomes Measures for use in Clinical Trials Initiative
$5,000
Children's National Medical Center/
Treat-NMD
Children's Nationwide
Exon Skipping screening
$55,250
University of North Carolina/
Cure Duchenne
Qi Long Lu MD/PhD
Biophysical Characterization of Truncated Dystrophin
$37,000
University of Minnesota
James Ervasti PhD
Duchenne Dashboard - Phases 1, 2, and 3
$9.900
OpenOnward
Carlo Rago PhD
Travel support for REVERSE-DBMD trial
$25,000
Kennedy Krieger Institute /
Johns Hopkins
Kathryn Wagner MD/PhD
Nutraceutical (THI), Skeletal Muscle Function
$117,072
University of Washington
Hannele Ruohola-Baker PhD
Duchenne Dashboard - Phase 4
$2,500
OpenOnward
Carlo Rago PhD
Carmeseal (P188), Cardiac and Skeletal Muscle Function
$10,000
Phrixus Pharma/
Coalition Duchenne
Bruce Markham PhD
Preparation of Halofuginone for Phase I/II Clinical Trial
$125,000
Halo Therapeutics
Marc Blaustein CEO
Duchenne Dashboard - Phases 5 and 6
$1,000
OpenOnward
Carlo Rago PhD
Development of Dystrophin Independent Therapy
$75,000
Boston Children's Hospital/
Jett Foundation
Louis Kunkel PhD
Nutraceutical (THI), Skeletal Muscle Function
$110,072
University of Minnesota
Dawn Lowe PhD
Nutraceutical (Quercetin) Respiratory and Cardiac Function
$206,458
Iowa State University
Joshua Selsby PhD
Anti-fibrotic (Relaxin) Skeletal Muscle and Diaphram Histology,
$50,000
University of Washington
Jeffrey Chamberlain PhD
Halofuginone Phase II Clinical Trial
$100,000
Halo Therapeutics
Marc Blaustein CEO
Duchenne Muscular Dystrophy Research Conference (Portland, Oregon)
$8,000
RaceMD
Chris James
New Biomarkers for Duchenne Muscular Dystrophy
$17,520
Children's Hospital Oakland/Race MD
Julie Saba MD/PhD
Preclinical testing of a PDE9 inhibitor in mdx5cv mice
$10,000
Boston Children's Hospital/
Jett Foundation
Louis Kunkel PhD
Nutraceutical (Quercetin) Muscle Function, Cellular Injury, and Bone Loss
$90,000
Iowa State University, Auburn
University, and The University
of Pennsylvania
Joshua Selsby PhD
Assessing the therapeutic impact of cannabidiol on muscle structure and function
$30,000
University of Reading/
Harrison's Fund
Keith Foster PhD
Development of SC-Prorelaxin for the Treatment of Duchenne muscular dystrophy
$25,000
University of Washington &
ImmunoMod
Jeffrey Chamberlain PhD Ronald Berenson MD
Follistatin Gene Therapy
$50,000
Childrens's Nationwide Network
Jerry Mendell MD/PhD
VBP 15 Clinical Trial
$50,000
ReveraGen Biopharma
Eric Hoffman, Ph.D
Modulating the S1P pathway to treat Duchenne
$30,000
Children's Hospital & Research Hospital at Oakland
Julie Saba MD,Ph.D