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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."

2015 MLD Family Conference™ in Newark, Delaware – July 10-11th.

Special Guests & Topics:
- Levi Gershkowitz taking individual and family portraits
- Milano Gene Therapy Clinical Trial - Alessandra Biffi
- Centers of Clinical Excellence
- Cannabis (CBD) Oil for clinical use

AGENDA <-- click to see full agenda

Thursday evening or Friday AM – arrivals

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

Saturday – 9am - 5pm including a Butterfly release & ending with a dinner party

Sunday – departures

863 days ago we gathered in Newark, Delaware.

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.

Registration Closed
Click to email us
  Online registration for this conference closed on Saturday, June 6. 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 2015 - Newark, DE agenda can be seen here.

Last year's final agenda: 2014 Pittsburgh, PA. Note the flow and times may be different from last year's agenda. The format will be very interactive and will likely 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

We will again have a structured children's program for all children - healthy and affected. Tammy and John return to lead two full days of games, art, music and other activities to help the kids 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 Embassy Suites, a category 5 Hilton brand star hotel located in Newark, Delaware.

Either a single king or two queen beds are available - please specify your preference during registration.

[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.

654 South College Avenue, Newark DE 19713 ... map to the hotel

+1-302-368-8000

Check In: 3pm, Check Out: noon

The two queen room can sleep six. King rooms sleep four. Please specify room style when you register. Optional roll-away beds 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 $139 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.

Click here to see photos.


MEALS

Lunch and dinner both Friday & Saturday are included in your registration. Complementary Embassy hot breakfast and evening manager's reception in the atrium each day..

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.

Average high of 85, low of 68 with occasional thunderstorms during July.

TRANSPORTATION & PARKING

Parking is free for those driving.

If you are flying you will be responsible for transportation costs from your home city to Philadelphia, which is about 36 minutes (30 miles) away.

If you advise us of your itinerary in advance, we will try to arrange free shuttles to and from Philadelphia airport.

LOCAL ATTRACTIONS

The Embassy Suites Newark – Wilmington/South is located in the heart of the Brandywine Valley, a region steeped in history and local beauty. Enjoy the many sporting activities in the locale including Frawley Stadium, home of the Wilmington Blue Rocks, and Delaware Park Racetrack. Catch the Fighting Blue Hens right across the road at the University of Delaware Sports Complex. Shopping and dining is tax free in Delaware; head to Christiana Mall to browse the many stores or enjoy a meal in one of the numerous restaurants. Visit the Wilmington Riverfront for many attractions, including parks, a wildlife refuge, a museum, and a tall ship. Visit the Delaware Art Museum to view the American art collection and pieces from the British Pre-Raphaelites or spend a day in the historic district of New Castle touring the homes, churches, and gardens of the quaint town.

COST

Online Registration closes Saturday, June 6.
Prices are slightly down from last year!

It's very helpful for our planning if you register now, even if you want to defer payment a bit. Payments are due June 6th and scholarships are available - see next tab.

1st adult - staying at the hotel $190 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.
2nd Adult Guest
$100 includes all meals and, if requested, an additional conference notebook.
Additional Adult Guests
$115 includes all meals and, if requested, an additional conference notebook. Hotel is charging us $15 per night per additional adult starting with the 3rd adult.
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 Reserve early to assure availability.
Cribs $0 Reserve early to assure availability.
Parking no charge
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 $139 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 Newark.

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 Saturday, June 6. 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 Saturday, June 6. 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-2015DE@MLDfoundation.org> +1 503-656-4808


Thank you to our SPONSORS, DONORS, & GRANT PROVIDERS

Shire Pharmaceuticals   Believing For Bryleigh   Stennis Foundation   CoriPalooza  

Thank you to our generous sponsors and grant providers ( Shire Pharmaceuticals, Believing For Bryleigh, Stennis Foundation, CoriPalooza) 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.

2015 DE 2 2

 

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