The Penn Medicine Orphan Disease Center (ODC) has announced the recipients of the 2017 MDBR grants for MPS and ML research.  Congratulations to the following scientists:

Dr. Patricia Dickson of Los Angeles Biomedical Research Institute at Harbor-UCLA, Torrance, CA
“Novel alpha-glucosaminidase for Sanfilippo C syndrome”

Dr. Emyr Lloyd Evans of Cardiff University, UK
“A humanised Drosophila melanogaster model of MPSIIIb to rapidly study central nervous system efficacy of combined chaperone and substrate reduction therapy”

To see the full list of grant recipients, please visit the ODC website.

The 5th Annual Philadelphia‐based Million Dollar Bike Ride will be held on Sunday, May 20, 2018 to raise much-needed funds for research in rare diseases.  Team MPS is registered for participation in this event, and registration for cyclists will be announced at a later date.

One major announcement to note is that The Million Dollar Bike Ride will have new eligibility guidelines and policies in place for 2019 and beyond.  Therefore, it is important that National MPS Society reaches its goal in 2018 due to the new fundraising policy listed below.

NEW Team Fundraising Policy: If a Disease Team raises less than $20,000, they are not eligible for the match, and thus the total funds raised will be directed back to the Orphan Disease Center.

New Eligibility Guidelines: Rare Disease-Focused Teams’ future participation for the Million Dollar Bike Ride will be determined by three factors.

1) Performance: The 20 top performing teams in the 2018 MDBR will be automatically grandfathered into the 2019 MDBR. Performance is based on a) number of dollars raised and b) number of participating cyclists. Teams will be ranked by these two factors, and the top 20 will automatically receive a spot in the 2019 event.

2) New Teams: Up to 3 additional new teams will be included in the 2019 MDBR.

3) Pool: Additional teams will be entered into a pool, and 5 will be chosen at our discretion. This pool could include both new teams and existing teams that did not make the cut.