Education Faces of MLD

The Premier Family Resource for Metachromatic Leukodystrophy Information & Support

Donate Now
Supporting Compassion for families, Awareness, Research, and Education.

MLD'2007 Boston

"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."

2011 MLD Family Conference™ Warwick (Birmingham), England – September 2nd & 3rd, 2011.

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.

An invitation is being prepared and will be available shortly.

Registration is anticipated to open Monday, 08/01/11, please check back.

Click on a title bar to open & view each topic panel...


Click here to see the Warwick (Birmingham) agenda.

You can see our previous conference agenda from 2011 Baltimore Maryland, USA here.


If there is sufficient advance demand, we will try to provide 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.


If there is sufficient advance demand, we will try to provide younger children a supervised separate room with games, DVD's, art, and other activities to help them enjoy their time, too.


We do not anticipate enough youth attendance to organize a youth program at this event.

HOTEL - information

Our host hotel is the three-star Hilton Warwick/Stratford-upon-Avon located at junction 15 of the M40 . . [more]

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 £99 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
  • {imgname}








Dinner Friday and both lunch & dinner on Saturday are included in your registration. Hotel guests will also enjoy a complementary hot breakfast each morning of their stay.

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

Friday's reception/dinner is very casual and at the hotel. Saturday's dinner will be off site as we all relax and try to capture a little of the local culture (see agenda). Transportation will be provided for those without cars.


Conference attire is casual. Meetings and Friday's social dinner are at the hotel. 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.


You are responsible for arranging and the cost of transportation to the hotel host city.

Parking is £5 per day.

We will try to arrange complementary transportation from the Warwick rail station to the hotel and back. This schedule is not yet set and depends on driver & van availability as well as your arrival/departure times. We are focusing on Friday afternoon arrivals and Sunday morning/early afternoon departures. Details to follow.

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


The hotel is 1 mile from Warwick Castle and 5 miles from Shakespeare's birthplace at Stratford-upon-Avon. Other local attractions include Hatton Country World, Heritage Motor Center, Kenilworth Castle, Ragley Hall, and the Stratford Butterfly Farm.

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

Online Registration closes Sunday, August 28.
1st adult - staying at the hotel £80 includes first adult & all MLD-affected family members, two nights at hotel, all breaks and meals from Friday afternoon through Sunday breakfast, and a copy of the conference proceedings. Standard rooms are singles, doubles (queen bed - max 2 people) or family - max 4 persons. Please contact us with special sleeping needs.
1st adult - NOT staying at the hotel £50 includes first adult & all MLD-affected family members, all breaks, Friday & Saturday dinner, and a copy of the conference proceedings. Does NOT include hotel room.
Additional Adult Guests
£50 no charge for second adult, includes all meals and conference notebook. max 2 adults per room.
(eating adult meals)
£0 includes all meals.
(eating child's meals)
infants (ea) free
Cribs or rollaways £0 crib
Reserve early to assure availability.
Rollaways not available at this hotel.
Parking £5 for those driving
Airport/Railway transfer to hotel not included Once we know your travel arrangements we will try to arrange several free shuttles.

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

Some scholarships will be available for those needing financial assistance.

Registration is anticipated to open Monday, 08/01/11, 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 by filling out the box on the bottom of the payment form. 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 Walk, 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.

Registration is anticipated to open Monday, 08/01/11, please check back.


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

Shire HGT  Mac's Team   Olivia's Walk  The Stennis Foundation


Home | About Us | Contact Us | Disclaimer | Privacy & Data Policy | Legal-Trademarks | (c) 2000-2019 MLD Foundation