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.”

Christine Lavery’s Memorial Event
Held by the UK’s MPS Society

April 13, 2018 near MPS House, Amersham, United Kingdom

An event to celebrate the life and legacy of Christine Lavery will be held at a venue in Amersham, near MPS House, on Friday, April 13, 2018 from 2:00 p.m. to 4:30 p.m. The MPS Society states, “As we are expecting a high number of attendees and there is limited capacity at the venue, we ask that you express your interest” by providing information using their online form. Be sure to click on “Send” at the form’s end. The MPS Society will eventually be sending out specific invitations to this memorial event. The maximum allowed number of persons in each attending party is four.

Hunter’s Hope Foundation’s
2018 Kelly Tough 12K Race and 1.2K Fun Run/Walk

May 18, 2018 in Orchard Park, New York, USA

Hunter’s Hope Foundation‘s annual Kelly Tough 12K race and 1.2K Fun Run/Walk will begin at 6:30 p.m. at the ADPRO Sports Training Facility, 1 Bills Drive, Orchard Park, NY 14127. The closest airport is the Buffalo Niagara International Airport. The Kelly Tough program is a Hunter’s Hope awareness and fundraising program created to honor the leukodsytrophy children they serve. Early Bird Registration is now available! After-race activities include food & beverages, family-fun entertainment and activities, and the award ceremony. Awards categories include: Top Fundraiser, Overall Female Finisher, Overall Male Finisher, 1st Place Relay Team, 1st Place female & male/age category, and 2nd & 3rd Place female & male/age category. Hunter’s Hope welcomes sponsors and helpful volunteers. Whether you’d like to participate as an individual runner, part of a 4-person relay, or as a Fun Runner/Walker, this is the event for you!

The First International Batten Awareness Day

June 9, 2018

Keep checking the Batten Disease Support and Research Association‘s web site for new developments regarding this global event!

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.

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!

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.