Center for Orphan Disease Research & Therapy

Events Archive

Spring 2014

Saturday, May 3rd, 2014 Million Dollar Bike Ride

Million Dollar Bike Ride Rare Disease Cycling Event FlyerWe thank all Million Dollar Bike Ride participants and sponsors for making the first annual Million Dollar Bike Ride such a big success! We had over 540 registered cyclists and raised over $1.4 million for rare disease research.

On Saturday May 3 , the Center for Orphan Disease Research and Therapy along with Rare Disease Cycling organized and sponsored the first annual Million Dollar Bike Ride to raise money for rare disease research, the event turned out to be a huge success with over a million dollars raised for rare disease research.

The money raised by each of the rare disease cycling team will be matched dollar-for-dollar towards an associated pilot research grant program.   The cycling event took place on the Penn's Campus, with the start/finish line at Highline Park (31st and Chestnut  St.).  This event is unique, it is the only cycling event/cycling fundraiser to start and end in the city of Philadelphia.   There were 3 route options — 11, 35 and 73 miles.  The ride started at 9:00am.  Refreshments, food, and entertainment at the start/finish line and fun for the entire family.

All participants received free merchandise, including a Million Dollar Bike Ride jersey. Individual cyclists registered to raise money for their specific orphan/rare disease foundation or cause, or registered to ride without fundraising.  The following are examples of participating teams. 

Please click on the video below.   And yes, Kyle,and Liam road, as did Lizzie - and they all finished and did an amazing job. Thank you for all of your efforts!

2014 Million Dollar Bike Ride Team Video

2014 The Million Dollar Bike Ride Photos

Downloading is free and prints can be purchased right from the site. To access the free hi res images, move your mouse over the larger photo on the right side of the page. A pop-up window will appear. Click on the yellow folder and the photo will download to your computer.

Teams who participated in MDBR includes:

  • Bike to End Duchenne
  • Pitt Hopkins Pedalers
  • Spin Factor for Hemophilia
  • Team FARA
  • Team ALD
  • Team Cure ML4
  • LAM Foundation
  • Homozygous Familial Hypercholesterolemia (HoFH)
  • Cure CMD
  • Team NTSAD
  • Raring to Go for CHI
  • Team NPC
  • RASopathies Network
  • Penn Scientists for Rare Diseases
  • MPS

For more information, about each team and their target diseases, click here.


First Annual Symposium on Rare Disease, "Emerging Therapies for Rare Diseases", Friday May 2, 2014

First Annual Symposium on Rare Disease FlyerOn May 2, 2014, CODRT held our First Annual Symposium on Rare Disease, "Emerging Therapies for Rare Diseases" held at the Smilow Center for Translational Research, 3400 Civic Center Boulevard, Philadelphia PA 19104.   The Symposium was held in the Rubenstein Auditorium at the Smilow Center for Translational Research.  

For directions and Parking for Future events at Smilow  Please park at the Penn Tower or Penn Museum, both are located off  South street. Parking is difficult to find at Penn, you might be lucky on Walnut Street, but it's 2hr meter parking and a bit of a walk.

If driving in heading east from 76, take the South Street Exit. At the first light make a Rt onto South Street (if heading west from 76, make a left onto South Street) and proceed to the first traffic light where you will make a left onto Convention Blvd.   Penn Tower parking will be on your Rt.   An easy way to enter the Smilow building is to use the entrance on East Service Drive (the street after Convention Blvd., a small street at the stop light). When you're on Civic Center Blvd, make a left onto East Service Drive. The main entrance is 1/4 of the way down the street on the left.  Enter the building, and take the escalators up stairs. You'll be there!

Click here for Agenda "Emerging Therapies for Rare Diseases" The spaekers are listed below.

The day provided pertinent information from great speakers on "Emerging Therapies for Rare Diseases", including question and answers segments that were informative.   The day started at 8:30 am with a continental breakfast, and speakers, then lunch. The afternoon will included, additional spealers, reception and poster session ending at 5:00pm.

The digital photo files for The Center for Orphan Diseases Symposium are below.  

May 2, 2014 The Center for Orphan Disease Symposium "Emerging Therapies for Rare Diseases"

Downloading is free and prints can be purchased right from the site. To access the free hi res images, move your mouse over the larger photo on the right side of the page. A pop-up window will appear. Click on the yellow folder and the photo will download to your computer.

There is no cost to register or join the center. Should you have any questions, please contact laversa@mail.med.upenn.edu or call 215-898-6111.

Speakers include:

  • H. Lee Sweeney, Ph.D.
    Director, Center for Orphan Disease Research and Therapy

Sweeney Slide Presentation

  • Jerry R. Mendell, M.D.
    Director, Center for Gene Therapy, The Research Institute at Nationwide Children's Hospital

Mendell Slide Presentation

  • Emil Kakkis, M.D., Ph.D.
    Chief Executive Officer and President at Ultragenyx Pharmaceutical Inc.

Kakkis Slide Presentation

  • Forbes D. Porter, M.D., Ph.D.
    Senior Investigator, Program Head, and  Clinical Director, NICHD NIH

Porter Slide Presentation

                

  • Gwyneth Jane Farrar, Ph.D.
    Professor of Genetics, Smurfit Institute of Genetics, School of Genetics and Microbiology, Trinity College Dublin, Ireland.

Farrar Slide Presentation

  • Edward G.D. Tuddenham, M.D.
    Emeritus Professor of Haemophilia, UCL Katherine Dormandy Haemophilia Center, Royal Free Hospital,    London, UK

Tuddenham Slide Presentation

  • Akshay K. Vaishnaw, MD, Ph.D.
    Chief Medical Officer, Alnylam Pharmaceuticals, Inc.

Speaker intro slides

For CODRT Membership details click here


Fall 2013

Thursday, November 21st, 2013 Rare Disease Retreat

Thank you for joining us for our First Annual Faculty Retreat! It was a huge success thanks to the amazing speakers and impressive turnout.

Speakers included:
We would appreciate feedback from the First Annual Faculty Retreat, "Charting Paths Forward", held at the University of Pennsylvania Museum of Archeology and Anthropology November 21, 2013.

Please ONLY rate speakers you heard during the day. The survey should take no longer than 5 minutes to complete.

Charting Paths Forward Survey