RYAN'S QUEST

PO BOX 2544 

HAMILTON, NJ 08690

© 2019 Ryan's Quest       501(c) (3)Documentation

(609) 947-3611

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

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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

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