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’s
Annual Family Gathering 2017

The 2017 Annual Family Gathering of the National MPS Society, which convened during August 2017 in Minneapolis, Minnesota, is remembered in photos posted for your enjoyment!

‘Coffee for a Cure’ program

In September 2017 the Ara Parseghian Medical Research Fund and the University of Notre Dame College of Science launched the ‘Coffee for a Cure’ program with Mother Parkers brands of beverages and Tim Hortons. Mother Parkers has committed to donate five cents to rare disease research for every cup ($1.20/box of 24 cups) of Tim Hortons and three cents for every cup ($0.72/box of 24 cups) of all other Mother Parkers brands of coffee & tea purchased through L & S Personal Coffee (orders in Canada can use this LINK). (Additional Mother Parkers coffee brands include Marley Coffee, Brown Gold, Higgins & Burke, Wolfgang Puck, and Martinson.) A portion of the proceeds will go directly to the Ara Parseghian Medical Research Fund for its efforts to find a cure for Niemann-Pick disease type C. The instructions for how to make these special purchases, which involves the use of a promo code, are found on their site under the paragraph header “Purchasing Coffee for a Cure Single Cups.”

Chloe’s Fight Rare Disease Foundation’s
Big Fat Greek 5K Run

September 6, 2019 at Lake Calhoun, Minneapolis, Minnesota, USA

The Big Fat Greek 5K Run to benefit Chloe’s Fight Rare Disease Foundation will happen on Friday evening, September 6th, 2019 at 6:30 p.m. around beautiful Lake Calhoun in Minneapolis. All registration and fundraising proceeds will go to physician researchers at the University of Minnesota Masonic Children’s Hospital. Some of the highlights of the event include:

• Top male and female 1st place prizes from the Running Room (1433 West Lake Street, Minneapolis)
• Post-race party tickets are included with each adult registration, to the Taste of Greece, the annual Minneapolis Greek Festival (held at St. Mary’s Greek Orthodox Church, 3450 Irving Ave. South, near Lake Calhoun in Minneapolis)
• Kid’s Dash
• Greek-themed Photo Booth

Registration and sponsorship opportunities are open now. In-depth details are available. Get your running shoes and your toga ready!

NTSAD’S 9th ANNUAL DAY OF HOPE

September 21, 2019

The National Tay Sachs and Allied Diseases Association (NTSAD)‘s 9th Annual Day of Hope on September 21, 2019 provides a special opportunity for individuals, families and other groups to raise funds for both research and NTSAD’s family services. The NTSAD invites you to “come together with families across the country and beyond to take part in the Day of Hope by holding your own individual fundraiser to support the aspect of NTSAD’s service that speaks to your heart.” For more information and to find out how you can hold your own fundraiser for the Day of Hope, including online giving pages, customized t-shirt campaigns, and more, contact Becky via e-mail at NTSAD.


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.