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.”

The Parseghian Classic

June 22-25, 2018 at Pebble Beach, located on the Monterey Peninsula in California, USA

The Parseghian Classic is a golf fundraiser benefiting Niemann-Pick disease type C research. Four different registration package-deals are being offered. Package rates include a portion which is a tax-deductible charitable donation to the Ara Parseghian endowment at Notre Dame University to support NPC research. The research is carried out at Notre Dame University and at other qualified institutions. Registration fees include lodging for Friday, Saturday and Sunday at The Lodge at Pebble Beach™ and all scheduled activities. Golf is played at Pebble Beach Golf Links® and Spyglass Hill® Golf Course. There is also an optional non-golfer group excursion for an additional $125 per guest. Please e-mail Kim Kirkpatrick or phone her at 574-631-3136 to pre-register.

Tenth Anniversary Jack Kliger Memorial Golf & Tennis Outing
at Piping Rock Club, Locust Valley, New York
to benefit The National Tay-Sachs & Allied Diseases Association

Tuesday, August 14, 2018

Please join the fun to benefit the NTSAD in support of the treatment and prevention of Canavan, Tay-Sachs, Sandhoff, GM1 gangliosidosis, and related genetic diseases. Jack Alan Kliger was diagnosed with Canavan disease when he was nine months old, and given a life expectancy of three to five years. Jack passed away in April 2008 just shy of his 14th birthday. Throughout his short life his family received support and encouragement by being part of the larger family of NTSAD and its members, whose children fought similar diseases and similar battles. This golf & tennis outing’s venue is located on Long Island at 150 Piping Rock Road, Locust Valley, New York 11560. Piping Rock Club is ranked as the 13th best golf course in New York state. If you or your company would like to participate in or sponsor this outing — or both! — please contact Patrick Woods at (617) 277-4463 or patrick@nullntsad.org.

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!

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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.