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2019 Million Dollar Bike Ride (MDBR) Pilot Grant Program

Grants to USA, Canada, and International
Researchers for Rare Disease Research

Agency Type:

Foundation / Corporation

Funding Source:

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University of Pennsylvania School of Medicine - Orphan Disease Center (ODC)

LOI Date:


Deadline Date:

10/24/19 8:00 PM EST


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Grants to USA, Canada, and International faculty-level academic researchers and senior scientific researchers at nonprofit institutions for research related to selected diseases. A letter of inquiry is required prior to submission of a full application. The Grant Program provides a one‐year grant to support research related to a rare disease represented in the 2019 Million Dollar Bike Ride.

Allowable expenses are:

  • Salary for PI
  • Salary/stipend and related benefits for graduate student/postdoctoral fellow/technical support
  • Travel (up to $1,500)
  • Laboratory supplies and other research expenses
  • IDCs of 10% are included in the total award amount

Research Areas for the 2019 MDBR Grant Program:

  • Adult Polyglucosan Body Disease (APBD)
  • Ataxia-Telangiectasia (A-T)
  • BPAN- A Neurodegeneration with Brain Iron Accumulation Disorder
  • CADASIL: Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy 
  • Castleman Disease
  • CDKL5 Deficiency Disorder
  • Charcot Marie Tooth (CMT)
  • Cystic Fibrosis
  • Choroideremia (CHM)
  • Congenital Hyperinsulinism (CHI)
  • Congenital Muscular Dystrophy (CMD)
  • CRB1 (Retinal Blindness)
  • Dyskeratosis Congenita & Telomere Biology Disorder
  • Fibrous Dysplasia (FD)
  • Fibrodysplasia Ossificans Progressiva (FOP)
  • Generalized Lymphatic Anomaly (GLA; a.k.a. lymphangiomatosis) and Gorham-Stout Disease (GSD)
  • Glucose Transporter Type 1 Defiency Syndrome (Glut 1DS)
  • Inclusion Body Myositis (IBM)
  • Lymphangioleiomyomatosis (LAM)
  • Maple Syrup Urine Disorder (MSUD)
  • Mitochondrial Complex 1 Deficiency (NUBPL)
  • Mucolipidosis Type IV (ML4)
  • Mucopolysaccharidoses (MPS)
  • MPS Gene Spotlight: Mucopolysaccharidosis (MPS)
  • Neuroendocrine Cell Hyperplasia of Infancy (NEHI)
  • Niemann Pick Type C (NPC)
  • Pitt Hopkins Syndrome (PTHS)
  • RASopathies
  • SETBP1 Disorder
  • Snyder-Robinson Syndrome
  • STXBP1 Encephalopathy

GrantWatch ID#:

GrantWatch ID#: 160999

Number of Grants:


Estimated Size of Grant:

Number of awards and dollar amounts vary per disease based on fundraising totals by each disease team:
APBD: $52,509 (2)
A-T: $56,418
BPAN: $61,245
CADASIL: $81,951
Castleman: $51,358
CDKL5: $55,898
CHI: $72,014
Choroideremia: $61,079
CF: $54,718
CMD: $91,176 (1) or $45,588 (2)
CMT: $60,330
CRB1: $40,177
DC: $62,664
FD/MAS: 484,325 (1) or $42,163 (2)
FOP: $40,208 (2)
GLA/GSD: $62,861
Glut 1DS: $46,858
IBM: $102,430
LAM: $72,704
ML4: $78,538
MPS: $64,063
MPS Gene Spotlight: $61,589
MSUD: $44,037 (2)
NEHI: $60,989
NPC: $61,637
NUBPL: $61,134
Pitt Hopkins: $68,709
RASopathies: $59,220
SETBP1: $67,943
Snyder-Robinson: $69,318
STXBP1: $69,588 (2)

Term of Contract:

This is a one year grant. The proposed funding period is February 1, 2020 to January 31, 2021.

Additional Eligibility Criteria:

All individuals holding a faculty‐level appointment at an academic institution or a senior scientific position at a non-profit institution or foundation are eligible to respond to this RFA.

Unallowable costs:
- Consultation costs
- Tuition
- Professional membership dues-Equipment >$5,000
- General office supplies, institutional administrative charges (e.g. telephone, other electronic communication, IT network, - etc. )
- Pre-award charges
- Any other expenses not directly related to the project

Pre-Application Information:

LOI Due Date: Monday, September 23, 2019, no later than 8:00 PM EST.

Full Application is by invitation only after review of Pre-Application and is due by October 24 at 8:00 PM EST.

Million Dollar Bikeride:

Contact Information:

Before starting your grant application, please review the funding source's website listed below for updates/changes/addendums/conferences/LOIs.

Submit LOI online:

For any administrative inquiries regarding this grant please email Samantha Charleston at

University of Pennsylvania
TRL Suite 1200
125 South 31st Street
Philadelphia PA 19104

URL for Full Text (RFP):

Geographic Focus:

USA: Alabama;   Alaska;   Arizona;   Arkansas;   California;   Colorado;   Connecticut;   Delaware;   Florida;   Georgia;   Hawaii;   Idaho;   Illinois;   Indiana;   Iowa;   Kansas;   Kentucky;   Louisiana;   Maine;   Maryland;   Massachusetts;   Michigan;   Minnesota;   Mississippi;   Missouri;   Montana;   Nebraska;   Nevada;   New Hampshire;   New Jersey;   New Mexico;   New York City;   New York;   North Carolina;   North Dakota;   Ohio;   Oklahoma;   Oregon;   Pennsylvania;   Rhode Island;   South Carolina;   South Dakota;   Tennessee;   Texas;   Utah;   Vermont;   Virginia;   Washington, DC;   Washington;   West Virginia;   Wisconsin;   Wyoming

USA Territories: American Samoa (USA)   Guam (USA)   Puerto Rico (USA)   Virgin Islands (USA)   Northern Mariana Islands (USA)

USA Compact Free Associations: The Federated States of Micronesia (USA)   Marshall Islands (USA)   Republic of Palau (USA)

Canada: Alberta   British Columbia   Manitoba   New Brunswick   Newfoundland and Labrador   Northwest Territories   Nova Scotia   Nunavut   Ontario   Prince Edward Island   Quebec   Saskatchewan   Yukon


International country outside of the USA, Israel and Canada.