SO MUCH PROGRESS …

The University of Minnesota, under the leadership of Dr. Paul Orchard, conducted the first-in-the-US gene therapy to treat metachromatic leukodystrophy in 2021. This pioneering technology holds the potential to stop the onset of symptoms of MLD and give children a life free of the effects of MLD. We can almost not hope to say it, but in other words, a cure. Chloe’s Fight was founded when this treatment option was years away. Now, with the University’s achievement firmly established we believe our work as a stand alone organization is done. However, we encourage any of our donors and supporters to continue to give to the U of MN to support the work to expand this work. You can direct any giving to the University of Minnesota’s “MLD Novel Therapies and Research Fund 24378” which Chloe’s Fight helped to establish in February of 2022.

Until there are cures. 

Chloe’s Fight First PRI in partnership with the Venn Foundation

In February, Chloe’s Fight joined the University of MN in a groundbreaking Venn Foundation PRI, focused on helping commercialize an Osteosarcoma Prognostic Test. The focus of this project is to take the promising research of Dr. Modiano and help bring it to market for the benefit of society. Chloe’s Fight Rare Disease Foundation is committed to continue to look for ways to partner with other rare disease organizations and fund research that could benefit children because TOGETHER, WE ARE STRONG.

With the support of donor partners, Venn will provide the University with $302,500 in PRI funding to help Dr. Modiano prove that the approach previously validated in dogs can also work with humans.  

Once proven in humans, the University hopes to license the technology to a company that will take it to market for the benefit of patients and their families.  

If the University earns revenue from the license, the University will split it with Venn on a 50/50 basis up until a maximum 3X return of the original Venn funding.  After applying a success fee, Venn will allocate this return pro rata to Chloe’s Fight and other participating donor accounts, where donors can then recommend redeployment of those dollars into new PRIs or grants.

Click below to download the fact sheet on the project.

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The Big Fat Greek 5K: September 11th • Lake Bde Maka Ska

 

Register Today  

Start to Fundraise

 


Some of the highlights include:

• Top male and female 1st place prizes from the Running Room
• After-party tickets included with each adult registration to the Taste of Greece
• Kid’s Dash
• Greek-themed Photo Booth

 

Packet Pickup

  • In an effort to reduce plastic waste, we will not provide physical packets this year
  • Prior to the race on Sept 11 starting at 5:30 PM, you may pick up your shirt and race bibs

Pre-Race Activities

  • Hair coloring (Kid’s Tent)
  • Greek-Themed Pictures (Photo Booth)

Race Start Times

  • 6:00 PM – Zumba warm-up (Main Stage)
  • 6:30 PM – Kid’s Race (Start Line)
  • 6:40 PM – Start of 5K Run (Start Line)
  • 6:45 PM – Start of 5K Walk (Start Line)

Post-Race Activities

  • 7:30 PM – 10:00 PM Post-race party (Taste of Greece, 34th & Irving)
  • 8:00 PM – Award Presentation (Taste of Greece)
 
Registration Prices:
Individual Adult Walker/Runner (18 and older) – $30 (includes T-shirt and  festival after-party tickets equivalent to the cost of a gyro), $35 day of
Youth (13-17 years old) – $15 (does not include T-shirt or festival after-party tickets)
Children (12 & under) – FREE (but must still register to participate in the Kid’s Dash)
Team Members – 5 adults minimum – $5/ person discounted registration fee

More Race Day Info:

  • PARKING – The closest pay parking lot to the 5K Start/Finish line is the Lake Calhoun Richfield Road Parking Lot, situated between Lake Calhoun & Lakewood Cemetary. But we suggest parking in the neighborhood close to the Taste of Greece so you’re closest to the after-party (3450 Irving Ave S., Minneapolis)

Click on one of the buttons below to register – More details & pics above!

Register Today  

 

 

 

 

 

Rare Disease Month

Wear Something Rare Happy Hour

Join us at LTD Brewing on Tuesday, February 27th 2018, evening from 4-9

Our friends at LTD Brewing are helping us raise funds and awareness by hosting a Wear Something Rare Happy Hour for Rare Disease Day. Come show your support at one of our favorite breweries. It’s like Halloween in February. With beer and science.