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.

Great Women’s 10k Glasgow

Run in support of The MPS Society (UK)

Sunday, June 4, 2017
Location: Kelvingrove Park, Glasgow, Scotland

Support the UK’s MPS Society by running in the 2017 “Simplyhealth Great Women’s Run” in Glasgow. Age categories include: to run the 10K, be aged 15+ years; to run the 3K, be aged 12+ years. Organizers said, “Whether you walk, run or jog, you will all get that finish-line feeling and be able to celebrate in style in the heart of Glasgow’s West End. The runners pass Glasgow’s famous Kelvingrove Art Gallery, Glasgow University, The Riverside Museum and the SSE Hydro. Post-event, the party atmosphere will continue in Kelvingrove Park with lots to enjoy.” Spaces are offered on a first-come, first-served basis. To begin the process of participating in this event, register your interest without delay by contacting the MPS Society via e-mail at All runners are subject to a minimum pledge per run, and will receive a fundraising pack and MPS Society running vest, as well as ongoing support from the MPS Society’s fundraising team. They said, “If you have already managed to secure a place on your own, then please do let us know.” The MPS Society has a vast offering of similar, major outdoor events available for fundraising participation. Download the handy .pdf summary.

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!

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