Calendar of 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.

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!

Fabry International Network’s
6th Fabry Expert Meeting

June 8-9, 2018 at the Vilnius Grand Resort, in Vilnius, Lithuania

Details are still being finalized by the Fabry International Network for the 6th Fabry Expert Meeting. You can use this handy contact form to request further information.

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 (NPC) 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.

Batten Disease Support and Research Association’s
2018 Family Conference

July 19-22, 2018 in Nashville, Tennessee, USA

The BDSRA’s 2018 Family Conference will convene at the Nashville Airport Marriott. Last year over 450 family members, children, and researchers attended to learn about patient care, education, and the latest research. As in years past, attendees have access to experts sharing research posters and helping to answer questions, connect with other parents, and attend sessions while medical care is provided for their child. The BDSRA also features their “SIB program” for siblings of affected children, with fun outings and other activity sessions. This event is still being planned, so stay tuned for further details!

Enzymes, Coenzymes & Metabolic Pathways
Gordon Research Conference

July 22-27, 2018 in Waterville Valley, New Hampshire, USA

The Chairs of this Conference are Holly R. Ellis & Kay Ahn. Applications for this meeting must be submitted by June 24, 2018. (Registration for this meeting is not the same as application. Before registering for the meeting, you must first apply to attend the Conference, and then be accepted by the Chair of the meeting. Once you have been accepted to the meeting, you may then complete the registration process.) For questions about application status, registration, payments, receipts, refunds, posters or site/travel information, please contact Brenda Figueroa. For questions about the Conference program, please send an email to GRC Program Updates.

15th International Symposium on MPS
and Related Diseases

August 1-4, 2018 in San Diego, California, USA

This symposium is being organized by the International MPS Network. The International MPS Network is the official body of the patient associations representing MPS and MPS societies at a European and global level. Membership in the International MPS Network is only open to the one nationally-recognized MPS Society or relevant patient association for each country globally. Up to two representatives from each accepted MPS Society or relevant patient association may attend the International MPS Network Meetings. There is no membership fee; however, member organizations are responsible for meeting the costs of their representatives’ attendance.

The deadline for submitting an abstract to the 15th International Symposium on MPS and Related Diseases was January 8, 2018. The early-bird discounted symposium registration deadline is April 21, 2018. There is no charge for adults or children with MPS or related diseases to attend the symposium.

The symposium convenes at the Sheraton San Diego Hotel & Marina, 1380 Harbor Island Drive, San Diego, CA 92101, (619) 291-2900. All hotel reservations must be made by July 9, 2018 in order to receive the discounted group rate.

National Niemann-Pick Disease Foundation
26th Annual Family Conference

August 2–5, 2018 in Louisville, Kentucky, USA

Details about the NNPDF’s 26th Annual Family Conference are still being developed. For the latest information visit their website.

Bereaved Parents of the USA
2018 National Gathering

August 3-5, 2018, at the Whispering Woods Hotel and Conference Center,
7300 Hacks Cross Road, Olive Branch, Mississippi 38654, USA

Bereaved Parents of the USA (“BPUSA”), a national non-profit organization, will hold their 2018 annual National Gathering in Olive Branch, Mississippi. Memphis International Airport is very close to Olive Branch. The Whispering Woods Hotel and Conference Center‘s toll-free number is 866-851-0393. Keep checking the BPUSA’s National Gathering web page for information updates.

Bereaved Parents of the USA self-describes as “a national non-profit self-help group that offers support, understanding, compassion and hope to bereaved parents, grandparents or siblings struggling to rebuild their lives after the death of their children, grandchildren or siblings.”

“There are no dues or fees to become a member of BPUSA and there are no paid salaries within the organization. All work on both the national and chapter level is done by volunteer bereaved parents with a strong desire to help other families survive the death of their children just as they were helped when their own children died.”

16th International Conference on
Neuronal Ceroid Lipofuscinoses (Batten Disease)

September 12-16, 2018 in London, England, United Kingdom

The 16th International Conference on Neuronal Ceroid Lipofuscinoses (Batten Disease), (“NCL 2018”), which is primarily a scientific meeting, will convene at Royal Holloway, University of London, which is a stunning University conference venue located in Egham, Surrey, close to the M25, M4, and is 7 miles from Heathrow Airport, and a 40-minute train journey from London’s Waterloo Station.

Professor Sara Mole, the Chair of NCL2018, said “This is the only international meeting with a focus on all types and aspects of the neuronal ceroid lipofuscinoses. We are planning an event that will educate and inspire your future endeavours, with participation from experts across all areas — research, clinical, therapeutic development, and particularly for education and family support. Especially welcome are those new to the Batten disease community, with keynote talks setting the scene on the first day and updating us on exciting relevant developments on the following days.”

Please note that you must be registered for the Conference in order to submit an Abstract. Abstract submission deadline is May 28, 2018. Conference organizers are hoping that successful sponsorship may enable them to offer a limited number of refunds for travel expenses and conference registration fees. Affected families and other interested persons are encouraged to contact the organizers for more information.

5th Conference on Clinical Research
For Rare Diseases (CCRRD)

October 4, 2018 in Rockville, Maryland, USA

The Rare Diseases Clinical Research Network will convene their 5th Conference on Clinical Research For Rare Diseases (CCRRD) for the benefit of new investigators, trainees, junior faculty, and others interested in rare disease research methodology. Registration is $100 and includes: meals, refreshment breaks, and meeting materials. Travel awards of $750 are available on a competitive basis. Their informative flyer would look great on the bulletin boards in your research institution!

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.

Follow us on Twitter: @ldned