Education Faces of MLD

The Premier Family Resource for Metachromatic Leukodystrophy Information & Support

Pinterest Follow

Donate Now
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."

2018 MLD Family Conference™ in Plymouth Meeting, Pennsylvania – July 6-7th.

We're heading a bit north this year to Philadelphia for our 2018 MLD Family Conference™. Plan your vacation to arrive a few days early to see the 4th of July fireworks at Independence Park in Philadelphia, the birthplace of America!

Registration costs are the same as last year and if you register early we'll again include Thursday night for free! We'll have plenty of social time, our highly-interactive sessions as well as some special breakout sessions!

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

We urge you to make your travel plans early, especially if you are flying in, to keep travel costs down. The closest airport is Philadelphia (PHL) and it's 30 min away. Newark is 90 miles northeast.


Thursday – arrivals

Friday –10:00am 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™

In just 14 days we'll gather in Plymouth Meeting, 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 practical inspiration & ideas to better care for your loved one.

Registration Closed
Click to email us
  Online registration for this conference closed on Monday, June 11. 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...


We continue to efine and adjust the agenda every year to include more time to socialize, adding focused breakouts, and this year are working on a new team teaching approach - to do away with one way lectures!

You can see the breadth and general flow of last year's Agenda here. Note the presentors, flow, and times may be sightly different from last year's agenda. The format will be very interactive and may include some remote video connections.


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 in a room near our meeting room for easy access and your 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.


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.


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

HOTEL - overview

Our host hotel is the DoubleTree Suites by Hilton Hotel Philadelphia West, a 3.5 rating on TripAdvisor star hotel located in Plymouth Meeting, Pennsylvania

640 Fountain Road, Plymouth Meeting PA 19462-1003 ... click for map to the hotel
Check In: 4pm, Check Out: 11am

The hotel specifies a maximum of 4 people in a king suite and 6 in a double bed suite. Cribs are available upon request

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

The peaceful suburban setting of the DoubleTree Suites by Hilton Philadelphia West in Plymouth Meeting is a quick 20 miles west of Philadelphia. Arrive Wednesday the 4th and see fireworks on the mall America's birthplace.

All rooms are suites with a pullout queen sofa in the living room. Either a single king or two double beds are available in the bedroom - please specify your preference during registration. All rooms have refrigerators and microwaves. The entire hotel is non-smoking.

[read more and see photos on the hotel web site ...].

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™


Your registration includes continental breakfast, lunch and dinner on Friday, and breakfast, lunch and dinner Saturday are included in your registration.

Please specify special dietary needs when you register (gluten free, diabetic, vegetarian), and whether child, adult, or no meals are needed.

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


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 July highs are 87 with average lows of 69 and occasional thunderstorms.


Parking is free for those driving.

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


Shop at the adjacent Plymouth Meeting Mall or the huge nearby King of Prussia Mall. Leave civilization behind when you escape to the natural beauty of Valley Forge National Park.


Online Registration closes Monday, June 11

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, continental breakfast, lunch and dinner on Friday, and breakfast, lunch and dinner Saturday are included in your registration and a copy of the conference proceedings. The hotel specifies a maximum of 4 people in a king suite and 6 in a double bed suite. Cribs are available upon request.
* 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.
* Same room as 1st adult. The hotel specifies a maximum of 4 people in a king suite and 6 in a double bed suite. Cribs are available upon request.

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.
(eating adult meals)
$40 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.
Roll-away beds not available Reserve early to assure availability.
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 Philadelphia, PA (PHL) 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 Plymouth Meeting.

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 11


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.


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 11


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


Shire Pharmaceuticals   Honoring Olivia   Soulumination   Dylan's Dinosaur Stomp  

Thank you to our generous sponsors and grant providers ( Shire Pharmaceuticals, Honoring Olivia, Soulumination, Dylan's Dinosaur Stomp) 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.

2018 PA D- O-0


Home | About Us | Contact Us | Disclaimer | Privacy & Data Policy | Legal-Trademarks | (c) 2000-2018 MLD Foundation