Patient & Family Meetings and Events

The listing of any event, or information about any event, or external web page(s) on the Lysosomal Disease Network web site does not imply or express any endorsement or guarantee of that event, that event information, or of any information on that external web page.

The National MPS Society (U.S.)
5K Run / 1 mile Memorial Walk
During Its 31st Annual Family Conference
in Minneapolis, Minnesota

Saturday, August 5, 2017
Location: University of Minnesota Campus
On Saturday, August 5th the National MPS Society of the USA will host the “Minneapolis Madness for MPS” chip-timed 5K Run & 1 mile Memorial Walk on the beautiful University of Minnesota campus in Minneapolis, Minnesota. Included are awards in various male/female categories. Interested would-be participants are encouraged to register online, build a team, and fundraise online! Don’t want to build a team? You can join a team or participate as an individual as well! Don’t want to participate in those “registered” ways? Volunteer to help run this event, and/or clean up after its conclusion. Event registration fees are $20 early-bird individual for 5K run registration; $60 early-bird family of four for 5K run registration; $10 registration for 1 mile memorial walk; $25 day-of-event for 5K individual registration; and $80 day-of-event family of four for 5K registration. After the race, enjoy the bonhomie over lunch ($10 lunch, per person, either paid in advance or on the day of the event). After visiting all of the excellent online information, questions can be directed to Race Director Terri Klein.

11th Annual Princess Riley Bear Golf Outing

for the Cure Tay-Sachs Foundation

Saturday, August 12, 2017
Location: Coldwater Country Club, 270 Narrows Road, Coldwater, Michigan 49036, (517) 279-2100

Details haven’t been posted yet; send your e-mailed questions and keep checking the Cure Tay-Sachs Foundation events listings.

5K Toga Run/Walk

For the Chloe’s Fight Rare Disease Foundation

Friday Evening, September 8, 2017
Location: Paths around Lake Calhoun, Minneapolis, Minnesota

Chloe’s Fight Rare Disease Foundation is partnering with the Taste of Greece, the Twin Cities’ largest celebration of Greek culture, for an invigorating toga run and walk around Lake Calhoun. It’s a beautiful course with baklava and Greek dancing at the end! Come have fun while you help Chloe’s Fight raise awareness and funds to promote local research on childhood rare genetic diseases at the University of Minnesota. This year’s goal is $30,000 to kick off a brand new research project at the University of Minnesota.

Some event highlights include:

• Best Toga Contest
• Top male and female 1st, 2nd, and 3rd prizes from the Running Room
• After-race party tickets to the Taste of Greece are included with each adult registration
• Kid’s Toga Race
• Greek-themed Photo Booth
• Post-race party begins at 7:30 p.m. at Taste of Greece, 34th & Irving, Minneapolis, Minnesota

Pre-race activities include:

• Hair coloring (Kid’s Tent)
• Greek-Themed Pictures (Photo Booth)
• Metropolitan Boys Choir (Main Stage)

A wealth of details are available!


If you would like your event listed here, please send it to the web master.

The listing of any event, or information about any event, or external web page(s) on the Lysosomal Disease Network web site does not imply or express any endorsement or guarantee of that event, that event information, or of any information on that external web page.