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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."

2014 MLD Family Conference™ in Pittsburgh, Pennsylvania – July 18-19th.

Please note - we are starting earlier on Friday this year.

Friday 10am start (includes lunch and a very casual welcome reception after the afternoon session)

Saturday 9am - 5pm followed by special event & dinner

Sunday - departures

1130 days ago we gathered in Pittsburgh, Pennsylvania.

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 Closed
Click to email us
  Online registration for this conference closed on Tuesday, July 1. If you would still like to register we will try to accommodate you as best we can. Please contact us via email or at +1 503-656-4808.

LIVE WEBCAST: There will be plenty of space on the free live webcast, which will appear on the Conference Overview page during the conference.

*** We are sorry, due to planning and space constraints we cannot accommodate on-site registration or walk-in attendees. ***

SHARE this Conference:

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

AGENDA

The working 2014 - Pittsburgh, PA agenda can be seen here.

Last year's final agenda: 2013 Parsippany, NJ. 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.

RESPITE ROOM

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 & YOUTH - POLICY

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.

CHILDREN'S PROGRAM

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

YOUTH PROGRAM

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 Doubletree Suites, a 3.5 star hotel located in Pittsburgh, PA

Relax from the bustle of central Pittsburgh with a warm cookie alongside a warm welcome at DoubleTree by Hilton Hotel & Suites Pittsburgh Downtown. Set in the heart of the central business district the hotel is 25 minutes from Pittsburgh International (PIT) Airport.

Suites have one bedroom (ask us if you need a 2 bedroom suite), a separate living room and bathroom. a sofa bed, recliner, 42-inch LCD flat-screen HDTV in the living room and a 37-inch LCD flat-screen HDTV in the bedroom, both with 60 channels including 22 HD channels, HBO, in-room movies and games. Work at the large desk with WiFi, telephones in each room and voicemail. Other amenities include a hairdryer, iron and ironing board, coffeemaker, valet, room service, MP3 clock radio and bottled water.

[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

One Bigelow Square, Pittsburgh PA 15219 ... map to the hotel

1-973-267-7373

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 $169 has been extended 3 days before and 3 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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MEALS

Lunch and dinner both Friday & Saturday are included in your registration. Please join us for a lighter fare continental breakfast in the meeting area Saturday morning..

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

Saturday's dinner will include a special event at the hotel featuring the children.

ATTIRE & WEATHER AVERAGES

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 Pittsburgh is 85, lows are 61. Humidity is 50% in the morning and typically 90% in the afternoon.

TRANSPORTATION & PARKING

Parking is $15 per day for those driving. (per day) There is only valet parking at this location. In & Out privileges are included.

If you are flying you will be responsible for transportation costs from your home city to Pittsburgh and from the airport to the hotel, which is about 25 minutes (20 miles) away.

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

LOCAL ATTRACTIONS

Indulge your sporting passions in 'the City of Champions.' The Pittsburgh Penguins’ Consol Energy Center is just footsteps from this downtown Pittsburgh hotel. Also easily accessible by the 'T' is the holy grail of Pittsburgh sports - Heinz Field, home of the six-time world champion Pittsburgh Steelers. PNC Park, the home of the Pittsburgh Pirates is also accessible via the 'T.' Ranked as the #1 Major League Ballpark by Yelp and the New York Times in 2011, PNC Park is the first ballpark of the modern era built in the United States with a two-deck design.

Pittsburgh’s South Side is the city's entertainment hub—a seemingly endless parade of bars and restaurants. Ask our staff for recommendations on the best South Side bars to catch Steelers games. Discover a new perspective on the City of Bridges from atop Mount Washington. Ride the Duquesne or Monongahela Incline up to Mount Washington for the number two-ranked 10 Most Beautiful Places in America in 2009 by USA Today®.

COST

Online Registration closes Tuesday, July 1.
We had to make a slight increase in the conference fees this year to cover the additional cost of including Friday's lunch

1st adult - staying at the hotel $200 includes first adult & all MLD-affected family members, two nights at hotel, lunch & 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 $175 includes first adult & all MLD-affected family members, same as above but does NOT include hotel room.
Additional Adult Guests
$100 includes all meals and, if requested, an additional conference notebook
Guests from for-profit companies
$500 includes two nights hotel, all meals, and conference notebook. Please note that industry costs are not subsidized.
Youth/Children
(eating adult meals)
$40 includes all meals, supervised youth program (if enough interest is expressed), and access to the respite room.
Children
(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.
Roll-away beds $0 Limited number available
Cribs $0 Reserve early to assure availability.
Parking $15 (per day) There is only valet parking at this location. In & Out privileges are included.
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 $169 This room rate has been extended 3 days before and 3 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 Pittsburgh.

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

Registration Closed
Click to email us
  Online registration for this conference closed on Tuesday, July 1. If you would still like to register we will try to accommodate you as best we can. Please contact us via email or at +1 503-656-4808.

LIVE WEBCAST: There will be plenty of space on the free live webcast, which will appear on the Conference Overview page during the conference.

*** We are sorry, due to planning and space constraints we cannot accommodate on-site registration or walk-in attendees. ***

SCHOLARSHIPS & FINANCIAL ASSISTANCE

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.

Please go ahead and register. Enter your confidential scholarship request on the bottom of the payment page.

CANCELLATION POLICY

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 Closed
Click to email us
  Online registration for this conference closed on Tuesday, July 1. If you would still like to register we will try to accommodate you as best we can. Please contact us via email or at +1 503-656-4808.

LIVE WEBCAST: There will be plenty of space on the free live webcast, which will appear on the Conference Overview page during the conference.

*** We are sorry, due to planning and space constraints we cannot accommodate on-site registration or walk-in attendees. ***

QUESTIONS

Questions? ... Contact Teryn Suhr <Conference-2014PA@MLDfoundation.org> +1 503-656-4808


Thank you to our SPONSORS, DONORS, & GRANT PROVIDERS

In memory of Mac Murray, Oliver Ciparelli, & Kim Parowski   Shire Pharmaceuticals   Honoring Olivia   Stennis Foundation   Believing For Bryleigh  

Thank you to our generous sponsors and grant providers ( In memory of Mac Murray, Oliver Ciparelli, & Kim Parowski, Shire Pharmaceuticals, Honoring Olivia, Stennis Foundation, Believing For Bryleigh) 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 – and you are only paying for a small portion of the direct costs.

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