Million Dollar Bike Ride Raising Money for Research Accepting Application for Grants

August 25, 2015

The Million Dollar Bike Ride is sponsored by the Orphan Disease Center, University of Pennsylvania.

Is your organization or non-profit interested in funding? Letters of Intent in response to an application request are due on September 14th, 2015. If invited to proceed, applicants can submit a full application before October 19th.

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There 26 awards focused on 17 different rare diseases including:

Research Focus Areas for Pilot Grants:

1) Adrenoleukodystrophy (ALD): Adrenoleukodystrophy, or ALD, is an x-linked metabolic disorder, characterized by progressive neurologic deterioration due to demyelination of the cerebral white matter. The adult form, known as Adrenomyeloneuropathy (AMN) develops in young adulthood, and in general, they progress more slowly. Beginning in their 20s and 30s, these young men exhibit neurological based motor lesions in their extremities. These lesions progress over many years and are inevitably accompanied by moderate to severe handicap. In approximately one third of these patients the central nervous system also becomes involved.

One $50,000 pilot grant is available with a focus on treatments for Adrenomyeloneuropathy (AMN), the adult form of the disease. We are interested in proposals that would provide a path towards a treatment, including advancing the understanding of what can be used as endpoints when conducting an AMN trial. This grant is made possible by Team Stop ALD and the Stop ALD Foundation.

2) Bronchiolitis obliterans: Two $50,500 pilot grants available with a focus on pediatric post-infectious Bronchiolitis Obliterans. Proposals that seek to improve understanding of the pathogenic processes involved in abnormal airway remodeling following exposure to adenovirus, mycoplasma, or other viruses or bacteria, as well as those which seek to improve clinical management and outcomes will be considered responsive. Proposals that address the development of BO as a complication of Stephens-Johnson Syndrome in the context of an airway infection with mycoplasma will also be considered.  These grants are made possible by Team Bronchiolitis Obliterans and the Children’s Interstitial and Diffuse Lung Disease Foundation.

3) Castleman Disease: One $63,000 pilot grant available.  We would like to investigate the role that genetics plays in HHV-8-negative or “idiopathic” multicentric Castleman disease (iMCD) by performing Whole Exome Sequencing or Whole Genome Sequencing on 20-25 patients with iMCD. In addition to sequencing the samples, the CDCN would like for bioinformatics to be performed and for a consent process to be developed that the CDCN will be able to use moving forward for future studies and biobanking purposes. This grant is made possible by Team Castleman Disease and the Castleman Disease Collaborative Network.

4) CFTR Nonsense Mutations: Two $51,500 pilot grants available to initiate or advance research and understanding of a treatment or a cure that would impact the nonsense mutation 1282X in the CFTR gene. The research could include drug discovery or other strategies to restore CFTR function, including suppression of premature termination, modulation of nonsense-mediated decay and gene editing.  These grants are made possible by Team Emily’s Entourage and the Emily’s Entourage organization.

5) Cystic Fibrosis: One $69,000 pilot grant available. Cystic fibrosis is a genetic condition affecting the lungs and digestive system. The grant will be awarded to advance research and understanding of a treatment or cure that would impact people carrying a nonsense mutation.  The research should include, but not be limited to, the R1158X gene mutation. This grant is made possible by Team Movin’ for Mallory: Cure Cystic Fibrosis! and the Movin’ for Mallory organization.

6) Congenital Hyperinsulinism (CHI): One $71,000 pilot grant available focusing on innovative, pre-clinical or clinical studies designed to improve the diagnosis, therapy, or quality of life for those affected by congenital hyperinsulinism.  This grant is made possible by Team Raring to Go for CHI, and Congenital Hyperinsulinism International.

(See full list here:

Each of these diseases were represented by teams in the 2015 Million Dollar Bike Ride this past May.  Teams raised money which was then matched by the Orphan Disease Center (dollar for dollar, up to $50,000) and will now be used to fund year-long pilot grants on the research of their choosing, pertaining to their team’s disease.  The Request for Application are posted on the Orphan Disease Center website, here. 

These grants are available to the international community, to academic institutions and nonprofits, only.   The first step is to submit an LOI via an electronic webform, which will be posted with a detailed outline of the guidelines.  The guidelines will include details about the 26 available grants, award amount of each grant, and specific science requested for research.  LOIs are due on Monday, September 14th by 5:00 PM EST.  We will then invite those whose LOIs are most responsive to the RFAs to submit a full application by Monday, October 19th.   We will then begin a review process that will wrap up by mid-November.  Final decisions and awards will be decided by early December, and grant funding will begin January, 2016.  We ask for 6-month and year-end progress reports.  All final award decisions are made by the Orphan Disease Center.

Best of luck to applicants!


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