Patient & Family Meetings and Events

3rd Annual Feel The Breeze 5K Race & Fun Run

Sunday, May 21, 2017
Location: Greis Park, 55 Wilbur Street, Lynbrook, NY 11563, USA
5K Race begins at 9:00 a.m.

The Quinn Madeleine Foundation is hosting its third annual Feel The Breeze 5K & Fun Run to benefit the Foundation’s mission to aid in the prevention of, and to support research for the treatment and cure of Niemann-Pick disease type A, and to facilitate memorable experiences for children under age 3 who have been diagnosed with a terminal or life-threatening illness.

The race’s age groups are defined as follows: 12 & Under, 13-17, 18-29, 30-39, 40-49, 50-59, 60-69, and 70+. The 5K Run is on a USATF-certified course — flat and fast! Medals will be awarded to the top male and female finishers, and to the top three male and female finishers in each age bracket. All participants receive a t-shirt. For the Kids’ Fun Run, for children less than age 13 – and their parents – all participants receive a special certificate. The Fun Run uses a half-mile course and begins before the 5K race begins, at 8:15 a.m. Virtual runners can also participate! Early-bird registration discount ends 11:59 p.m. on April 29th. Now is a great time to register!

NORD is Taking Applications NOW for the
Rare Disease Summer Family Camp 2017

For the second year, the National Organization for Rare Disorders (NORD) is proud to once again partner with The Hole in the Wall Gang Camp on a rare disease summer family camp in Connecticut! The camp provides a special opportunity for children and families impacted by rare diseases to join together for a weekend of pure fun — free of charge. Camp is open to 25 families who are located in the Northeast USA, and it will take place June 1-4, 2017 in Ashford, Connecticut at 555 Ashford Center Road. For details, and to download the application form, visit NORD. Don’t delay — submit your family’s application NOW.

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.


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