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.

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!

2nd Annual Parker Shoemaker Memorial 5K Race or Walk

To Benefit Hunter’s Hope Foundation
Saturday, September 16, 2017
Location: The Boardwalk in North Beach, Maryland
This 5K race or walk will benefit the Hunter’s Hope Foundation in memory of Parker Eugene Shoemaker who passed away from Krabbe leukodystrophy. Since his diagnosis, the Shoemaker Family have been dedicated to the expansion of newborn screening in the state of Maryland, and to supporting families affected by Krabbe disease. Krabbe disease is not currently included in Maryland’s newborn screening panel. Had the state of Maryland screened for Krabbe disease at birth, Parker could have been given lifesaving treatment before the irreversible damage occurred. Unfortunately, his diagnosis came too late to receive a cord blood transplant, the only treatment that could have saved his life. He died at the age of 10 months.

The fundraising goal for this race is $20,000. Runners and walkers can register to participate as individuals, create a team, or join an existing team. This event begins at 9:00 a.m. on the Boardwalk. After reading the registration web page, questions can be directed to: KellyTough@nullhuntershope.org.


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.