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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."

2017 MLD Family Conference™ in Suffolk, Virginia – July 14-15th.

We’ve heard your voices and this year we are bringing the 2017 MLD Family Conference™ to a centralized location for ALL MLD families from the north and the south!

We are also shaking up the agenda a little to include more time to socialize and spend time with each other as well as special breakouts for late infantile, juvenile and adult MLD families!

Come check in Thursday and get settled before the conference starts on Friday.

We urge you to make your travel plans early, especially if you are flying in, to keep travel costs down.
Closest airport - Norfolk, VA (30 min)
DCA - 3.5 hr. drive


AGENDA <-- click to see full agenda
Attendees <-- click to see list of Academic and Industry Attendees

Thursday – arrivals

Friday –9:30am start – includes lunch and a very casual welcome dinner

Saturday – 9:30am - 5pm followed by a MLD Family dinner celebration

Sunday – departures

MLD Family Conference™

35 days ago we gathered in Suffolk, Virginia.

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.

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

Please check out the conference videos here.


SHARE this Conference:

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

AGENDA

The working 2017 - Suffolk, VA agenda can be seen here.

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

We will again have a structured children's program for all children - both healthy and affected. We have experienced leaders planning two full days of games, art, music and other activities to help the kids 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 that might include a Suffolk treasure hunt (ages 11 and up).

HOTEL - overview

Our host hotel is the Hilton Garden Inn Suffolk Riverfront, a 3 star, 4.5 review rating onTripAdvisor, and 2017 TripAdvisor Certificate of Excellence Award star hotel located in Suffolk, Virginia.

Hilton Garden Inn Suffolk Riverfront is set on a six-acre park on the banks of the Nansemond River and is conveniently located near Virginia Beach, Norfolk, Chesapeake, and Portsmouth. Our hotel in Suffolk, Virginia is only 25 minutes from Norfolk International Airport.

Either a single king or two queen beds are available - please specify your preference during registration. All rooms have refrigerators and microwaves.

[read more on the hotel web site ...]. Click here to see photos.



PLEASE NOTE - DO NOT contact the hotel directly for reservations or special requests, all reservations must be made via the MLD Foundation.

100 East Constance Road, Suffolk VA 23434 ... map to the hotel

+1-757-925-1300

Check In: 3pm, Check Out: noon

Both room styles sleep a maximum of four people. Optional roll-away beds (in king room only) and cribs are 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 $130 has been extended 3 days before and 3 days after the conference if you wish to stay in the area for any extra time.

MLD Family Conference™
PLEASE NOTE - DO NOT contact the hotel directly for reservations or special requests, all reservations must be made via the MLD Foundation.

MEALS

Lunch and dinner on Friday, and breakfast, lunch & dinner Saturday are included in your registration. .

Please specify special dietary needs when you register (gluten free, diabetic, vegetarian)

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

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.

highs around 90 with a lows around 70 and occasional thunderstorms.

TRANSPORTATION & PARKING

Parking is free for those driving.

If you are flying you will be responsible for transportation costs from your home city to Norfolk, VA, 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 Norfolk, VA airport.

LOCAL ATTRACTIONS

Located in the historic downtown area of Suffolk, the Hilton Garden Inn Suffolk Riverfront hotel is nestled on a six acre park overlooking the Nansemond River. The hotel is near the Port of Hampton Roads and is conveniently located near Virginia Beach, Norfolk, Chesapeake and Portsmouth. Pay a visit to the Great Dismal Swamp, located just nine miles from the hotel.

COST

Online Registration closes Monday, June 12


Prices are holding constant from last year!

Scholarships are available - see the tab below this one.

1st adult - staying at the hotel $200 includes first adult and all MLD-affected family members, 2 nights at the hotel, lunch & dinner Friday, all meals Saturday, and a copy of the conference proceedings. Both room styles sleep a maximum of four people. Optional roll-away beds (in king room only) and cribs are available..

* This price is only for families with a MLD loved one.
1st adult - NOT staying at the hotel $185 includes first adult & all MLD-affected family members, same as above but does NOT include hotel room.
Additional Adult Guests
$110 includes all meals and, if requested, an additional conference notebook. Up to 4 people per room
* Same room as 1st adult. Both room styles sleep a maximum of four people. Optional roll-away beds (in king room only) and cribs are available..

Guests from for-profit companies
$800 flat rate registration includes up to 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 Rollaway is available only in king room.
Cribs $0 Reserve early to assure availability.
Parking no charge
Airport Transportation   Once we know your flight itinerary we will try to arrange free shuttles to and from Norfolk, VA (ORF) airport for you.
Extra Nights $130 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 Suffolk.

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 registration payment page.

Register Now
Online Registration closes Monday, June 12

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 registration 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.

Register Now
Online Registration closes Monday, June 12

QUESTIONS

Questions? ... Contact Teryn Suhr <Conference-2017VA@MLDfoundation.org> +1 503-656-4808


Thank you to our SPONSORS, DONORS, & GRANT PROVIDERS

Shire Pharmaceuticals   Honoring Olivia   Soulumination  

Thank you to our generous sponsors and grant providers ( Shire Pharmaceuticals, Honoring Olivia, Soulumination) 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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