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Supporting Compassion for families, Awareness, Research, and Education.

MLD Family Conference

"I can't describe to you what it means to families to finally meet another family face to face at a MLD Family Conference. The rarity of MLD makes families feel very isolated. Our extended family can't understand what we are going through, and very few doctors know about MLD so families find themselves educating the doctors and staff who care for their children, and the families have to watch and try to cope as their child endures painful losses and slowly slips away. Time spent sharing with one another on our family discussion list helps but being able to touch and hug someone in person does more than words can say."

2013 MLD Family Conference™ in New Jersey, – August 2nd & 3rd, 2013.

Please note - we are returning to our "traditional" conference schedule this year:.

Friday 1pm afternoon session followed by a very casual welcome reception

Saturday 9am - 5pm followed by group dinner

Sunday - departures

1421 days ago we gathered in Parsippany, New Jersey. Parsippany is centrally located between New York City and Philadelphia, and within driving distance from northern Virginia to Massachusetts.

Please join us as we gather families and their MLD affected loved ones along with the world's leading MLD doctors, researchers, scientists, and caregivers for a weekend of fun, education, discussion, and compassion. There will be plenty of group and one-on-one time to meet the other families and the doctors. We want you to leave the meeting with new friends, new knowledge, and a practical inspiration with ideas to better care for your loved one.

Conference videos have been uploaded. Click here to view them.

Download an INVITATION(PDF) Adobe PDF

Registration is no longer available -- this conference is over.

Please check out the conference videos here.

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Click the header to open & view each panel...


The working 2013 - Parsippany, NJ agenda can be seen here.

Last year's final agenda: 2012 Charlotte. Note the flow and times will be different from last year's agenda. The format will be very interactive and include video calls to several international researchers.


We will be providing a volunteer staffed respite room for those affected with MLD so you can enjoy the presentations if your loved one needs time to rest or simply wants to have a better time with DVDs, art and other activities. They will be be in a room near our meeting room for peace of mind. You will be responsible for all medications, feeding, and toileting.


Children and youth must be supervised while at the hotel - either sitting with you in the meeting, supervised by an adult in your room, or participating in our children or youth programs. They cannot roam the hotel or swim unsupervised.


Your younger children will have a supervised room with games, DVD's, art, and other activities to help them enjoy their time, too.


If you express interest and there are enough youth, we will try to put together a separate youth program (ages 11 and up)

HOTEL - overview

Our host hotel is the Hilton Parsippany, a 3.5 star hotel located in Parsippany, NJ

Hilton Parsippany has a full-service spa (for use before or after the conference), an outdoor pool, and an indoor pool.Complimentary wireless Internet access is available in public areas and a computer station is located on site. Dining options at this business-friendly hotel include a poolside bar, a bar/lounge, and a snack bar/deli. Additional amenities include a spa tub, and a 24-hour fitness facility. This is a smoke-free property.

The 353 air-conditioned guestrooms at Hilton Parsippany include MP3 docking stations and safes. For a surcharge, guests can use the in-room wireless and wired high-speed Internet access. Televisions are equipped with premium cable channels, free movie channels, and video-game consoles. All accommodations provide desks, ergonomic chairs, and speakerphones with voice mail. Bathrooms offer hair dryers and complimentary toiletries. Additional amenities include coffee/tea makers and complimentary weekday newspapers.

[read more on the hotel web site ...]

PLEASE NOTE - DO NOT contact the hotel directly for reservations, all reservations must be made via the MLD Foundation to be part of our room block.

HOTEL - information

1 Hilton CT, Parsippany NJ 07054 ... map to the hotel


Check In: 3 PM, Check Out: noon

Hotel rooms sleep a maximum of five people due to fire regulations. If your party needs a second room please let us know so we can make special arrangements and offer a discount if available.

We strongly encourage all families, even local families, to stay at the conference hotel. A key aspect of the MLD Family Conference is the casual atmosphere and ability to mingle with other families. Our hotel rooms are underwritten by grants and donations to keep the cost to a minimum.

The conference room rate of $119 has been extended 2 days before and 2 days after the conference if you wish to stay in the area for any extra time.

PLEASE NOTE - DO NOT contact the hotel directly for reservations, all reservations must be made via the MLD Foundation to be part of our room block.

HOTEL - pictures
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Dinner Friday & Saturday and a continental breakfast & lunch Saturday are included in your registration. A hot breakfast Saturday is not included. You may purchase your own hot breakfast prior to the meeting at the hotel restaurant or join us for a lighter fare continental breakfast in the meeting area .

We try to keep the meals & breaks light and reasonably healthy.

Saturday's dinner will be off site at Black River Barn. We'll all relax and try to capture a little of the local culture. Transportation will be provided for those without cars.
Map to the restaurant


Conference attire is casual. However, while it will be warm and humid outside, hotel meeting rooms can often be cool so please consider a light sweater for the meeting rooms.

The average high temperature this time of year in Newark is 84, lows are 68. Humidity is 75% in the morning and 54% in the afternoon.


Parking is free for those driving

If you are flying you will be responsible for transportation costs from your home city to Newark and from the airport to the hotel, which is about 35 minutes (30 miles) away.

If you advise us of your itinerary in advance, we will try to arrange free shuttles to and from Newark airport where that is practical.

Transportation to Saturday evening's off site meal will be provided for those without their own cars.


Stay an extra day to enjoy New York City which is just 32 miles away.

Many have asked about the 9/11 Memorial. Tickets are available (as of June 1st) for Sunday Aug 4th. They are $2 each and can be reserved here:

The hotel’s free scheduled shuttle service to the train station provides easy access to the famous Broadway Theaters, New York stores, Madison Square Garden, sporting venues and other New York City attractions. Take a day trip to Waterloo Village, a restored colonial town dating back to 1760, or watch the New Jersey Nets, the New York Giants and the New York Jets at the nearby Meadowlands Sports Complex. Enjoy superb shopping opportunities at Morristown Green or explore the historically preserved town of Morristown.

We will get a taste of the region at a special off site dinner Saturday evening at a local establishment.


Online Registration closes Monday, July 15.
We are able to hold our Conference fees the same over the last two years thanks to our generous donors and sponsors!

1st adult - staying at the hotel $150 includes first adult & all MLD-affected family members, two nights at hotel, dinner Friday, all meals Saturday, and a copy of the conference proceedings. See Hotel Information for details on number of people allowed per room.
* This price is only for families with a MLD loved one.
1st adult - NOT staying at the hotel $125 includes first adult & all MLD-affected family members, same as above but does NOT include hotel room.
Additional Adult Guests
$50 includes all meals and, if requested, an additional conference notebook
Guests from for-profit companies
$175 includes two nights hotel, all meals, and conference notebook.
(eating adult meals)
$30 includes all meals, supervised youth program (if enough interest is expressed), and access to the respite room.
(eating child's meals)
$20 includes all meals and access to the children's/respite room.
infants (ea) free < 1 year old. Does not include child care or meals.
Rollaway beds $20 The hotel uses air mattresses instead rollaways
Cribs $0 Reserve early to assure availability.
Parking no charge for those driving
Airport Transportation not included Once we know your flight itinerary we will try to arrange free shuttles to and from the airport for you.
Extra Nights $119 This room rate has been extended 2 days before and 2 days after the conference if you wish to stay in the area for any extra time.

Please note that you will be responsible for your own travel arrangements and costs to get to Parsippany.

Some scholarships will be available for those needing financial assistance. Please go ahead and register and enter your scholarship request on the bottom of the payment page.

Register Now Online Registration closes Monday, July 15


We want everyone that wants to attend to be able to. If you need assistance with registration or travel expenses please let us know. We will confidentially try to help as best we can.


We recognize that life with MLD brings surprises on a schedule you can't always control. However, we have to make firm financial commitments to the hotel for rooms and meals well in advance of the actual conference. Generally, we cannot accept cancellations, however, if you need to cancel please let us know as soon as possible so we can work with you to try an accommodate a refund. We will do our best but the exact refund amount will depend on our hotel contract obligations at the time of the cancellation.

REGISTRATION - policy & fine print

The MLD Family Conference™ is for the benefit of MLD affected families and those providing their immediate support. We restrict attendance to create an atmosphere of intimacy for the families and to keep our focus on MLD. The MLD Foundation reserves the right to restrict or deny registration and attendance at MLD Family Conferences to achieve this goal.

This conference is being organized by the MLD Foundation. Check with your tax consultant about the deductibility of any expenses associated with this conference.

Registration is no longer available -- this conference is over.

Please check out the conference videos here.

Questions? ... Contact Teryn Suhr <> +1 503-656-4808


Shire Pharmaceuticals   Dylan's Dinosaur Stomp   Honoring Olivia   Eli & Ella's Prayer Warriors   Stennis Foundation   In Memory of Lucas Viscomi  

Thank you to our generous sponsors and grant providers ( Shire PharmaceuticalsDylan's Dinosaur StompHonoring OliviaEli & Ella's Prayer WarriorsStennis FoundationIn Memory of Lucas Viscomi,  who through their generous support make this conference much more affordable for the attending families.

We anticipate and want to thank in advance the families who individually donated to support of our conference scholarship fund. The MLD Family Conference is not a fund-raiser for the MLD Foundation so you are only paying for direct costs.

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