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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."

2012 MLD Family Conference™ in Charlotte, North Carolina – June 30-July 1st, 2012.

Please note - the conference schedule & format is different this year.
* Friday - very casual welcome reception
* Saturday 10am -5pm plus dinner
* Sunday 9am - 4pm with departure reception

We return to the Southeastern US for this year's conference.

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.

Please return to this page on June 30th – July 1st to see and participate in a live webcast of the conference including the Butterfly Release and the first 30 minutes of the Saturday evening Dinner.

AGENDA <-- click to see full agenda

- Saturday June 30th from to
- Sunday July 1st from to
All times ,

Download an INVITATION(PDF) Adobe PDF

Registration Closed
Click to email us
  Online registration for this conference closed on Sunday, June 17. 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...


The working 2012 Charlotte agenda can be seen here.

Last year's final agenda: 2011 Baltimore. Note the times will be quite different and the format will be much more interactive.

Please note - the conference schedule & format is different this year.
* Friday - very casual welcome reception
* Saturday 10am -5pm plus dinner
* Sunday 9am - 4pm with departure reception

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 adjoining 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 separate 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) with age appropriate activities.
HOTEL - information

Our host hotel is the DoubleTree Suites - Charlotte Southpark, a 3.5 star all suite hotel located in the heart of Charlotte's SouthPark area.

6300 Morrison Boulevard, Charlotte NC 28211 ... map to the hotel

(704) 364-2400

Check In: 3 PM, Check Out: 12 PM

The all-suite hotel is well equipped for you, your family, and your MLD affected loved one(s). Each 700+ square feet suite has a large living room with sofa bed, separate bedroom with king size bed (or two queen beds) and bathroom, separate kitchen including oven, full-size refrigerator, microwave, sink, dishwasher, utensils and dinnerware. DoubleTree features plush-top mattresses, luxurious linens, down comforter and jumbo pillows all with outer hypo allergenic covers ~ the pillows, comforters and bed toppers are 100% Down. [more]

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

HOTEL - pictures
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Dinner Saturday and lunch both Saturday & Sunday are included in your registration. Hotel guests will also enjoy a complementary continental breakfast each morning of their stay.. A light departure reception will be held Sunday afternoon.

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

A very casual reception prior to the conference will be held for those arriving Friday.

Saturday's dinner will be off site at Rooster's Wood Fired Kitchen. 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


North Carolina is hot and humid this time of year. Conference attire is casual. Please consider bringing a sweater as the temperature in the hotel can be cool at times. Saturday's dinner will be off site and you are welcome to have a change of clothes for dinner - but we will still be casual.


Parking is free for those who are driving.

If you are flying you will be responsible for transportation costs from & to Charlotte airport, which is about 10 miles away. If you advise us of your itinerary we will try to arrange free shuttles to and from the airport where that is practical.

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


Charlotte is home to the the Mint Museum, Billy Graham's Library, Carowinds amusement park, Daniel Stowe Botanical Garden, the NASCAR Hall of Fame and more.

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

Online Registration closes Sunday, June 17.
Conference fees are down 14% from 2010 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, a welcome reception Friday, dinner Saturday, continental breakfasts & break Saturday & Sunday, a departure reception Sunday, and a copy of the conference proceedings. Standard room has one king or two queen beds - max 5 persons. Please contact us with special sleeping needs.
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 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.
Cribs or rollaways $0 crib
Rollaways not available
Reserve early to assure availability
Parking $0 for those driving
Airport Transportation not included Once we know your travel arrangements we will try to arrange free shuttles.

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

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.

Registration is anticipated to open Thursday, 05/03/12, please check back.


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.


Shire HGT   Mac's Team    The Stennis Foundation  
Thank you to our grant providers (Shire HGT), sponsors (Mac's Team, Olivia's Night, The Stennis Foundation), 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.

Online registration for this conference is no longer available.
Please contact us at 503-656-4808 for further information.


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

Shire HGT   Mac's Team    The Stennis Foundation  
Their sponsorships, grants, and support are making this conference much more affordable for the attending families.

We also wish to thank the individual families for their donations to the scholarship fund.


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