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.”

8th Annual Swing and Bling Event
in Support of the Cystinosis Research Foundation

October 5-6, 2018 in Sacramento, California, USA

Jenna and Patrick’s Foundation of Hope present the 8th Annual Swing and Bling Event to raise research funds for the Cystinosis Research Foundation. The ‘swing’ part (golf) happens on Thursday, October 4th at Catta Verdera Country Club, in Lincoln, California, northeast of Sacramento. Then, the ‘bling’ part (dinner) happens on Friday evening, October 5th at the Kimpton Sawyer Hotel in the heart of downtown Sacramento. Golf sponsorships and dinner sponsorships are available.

Rotary Club of Shady Brook’s 2018 Charity Golf Outing
in Yardley, Pennsylvania to Benefit Drew’s Hope

Thursday, October 11, 2018 at Makefield Highlands golf course

This year, the Rotary Club of Shady Brook is dedicating its 2018 Charity Golf Outing funds-raised to Drew’s Hope, whose funds support research into treatments and cures for, and creating greater awareness of, Batten Disease.

The golf tournament, a “rain or shine” event, will have an 18-hole scramble format, with longest drive, closest-to-the-pin on the par 3s, and other fun skill challenges. The tournament will be preceded by a buffet luncheon, and followed by an open-bar happy hour, complete with hot hors d’oeuvres, raffles, a silent auction, dinner and an awards ceremony. Dinner-only tickets are also available. The Makefield Highlands golf course is located at 1418 Woodside Road, Yardley, Pennsylvania, 19067.

You can help the Rotary Club support Drew’s Hope by registering and playing in the golf outing, by becoming a sponsor, or buying an ad in the event program, or providing gift certificates for goods or services which can become part of the silent auction. The sponsorship deadline is September 28, 2018. The sponsorship flyer is very informative!

National Gaucher Foundation’s
2018 Patient Meeting: Ask the Experts

October 27, 2018, 7:30 p.m., in New York City, New York, USA

The National Gaucher Foundation‘s “2018 Patient Meeting: Ask the Experts” convenes at 7:30 p.m. at The Mezzanine, 55 Broadway, New York, NY, 10006. The gathering includes a panel discussion and a champagne dessert reception. Panelists include Drs. Neal Weinreb (University of Miami (FL)), Heather Lau (New York University School of Medicine) and Pramod K. Mistry (Yale University School of Medicine). Also included is an NGF Teen Meetup, for teens aged 12 – 17! Join other teens to connect and have a conversation about living with Gaucher disease. The Teen Meetup will be facilitated by Laurie Bailey, Clinical Research Manager, Division of Human Genetics, at Cincinnati Children’s Hospital. Online registration is necessary. This patient meeting is supported by educational grants from Pfizer, Sanofi Genzyme, and Shire Human Genetic Therapies, Inc.


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.