Charset MLD Family Conference™ 2011 - Melbourne, Australia
Education Faces of MLD

The Premier Family Resource for Metachromatic Leukodystrophy Information & Support


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."

2011 MLD Family Conference™ in Preston - Melbourne, Australia – Saturday March 11th, 2011.

Please join us as we gather families and their MLD affected loved ones along with some medical experts and caregivers for a focused afternoon of fun, education, discussion, and compassion. There will be 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.

Download an INVITATION(PDF) Adobe PDF

Register for the MLD Family Conference™
Online Registration closes Friday February 11th.

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The conference starts at 13:00 and runs until 20:00, including an informal dinner. You can see the preliminary working agenda here.

We have asked for, but not yet confirmed, a respite room for those affected with MLD so you can enjoy the presentations if your loved one needs time to rest. 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, or supervised by an adult in your room, or participating in our children or youth programs. They cannot roam the hotel or swim unsupervised.
HOTEL - information

Our host hotel is the Rydges Bell City Hotel, Preston, Melbourne conveniently located at 215 Bell Street. The Manhattan style rooms offer a Rydges Dream bed, self contained kitchenette including stove top, microwave, fridge, lounge & dining. All rooms feature work station, high speed internet, foxtel, self controlled reverse cycle air conditioning / heating, LCD TV & in room safe.

If necessary, you are responsible for making your own hotel reservation by contacting ALDS as they coordinating the room block reservations. Please contact Robyn Loh, Ph (03)98452831 Email to make a reservation at the conference rate.

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HOTEL - pictures
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A casual dinner on Saturday evening will be provided.

We try to keep the meals & the afternoon break light and reasonably healthy. If you have special dietary needs please let us know when you register.


Parking is available at no charge for those who are driving.

No other transportation is being provided by MLD Foundation.




There is no cost to attend this Conference thanks to our collaborators, sponsors and donors.

Overnight guests will be responsible for and will pay to the hotel upon check out - contact Robyn Loh (03)98452831 at ALDS for access to their block of sleeping rooms.

Register for the MLD Family Conference™
Online Registration closes Friday March 11th.


We want everyone that wants to attend to be able to. If you need assistance with registration or travel expenses please let Robyn Loh at ALDS know (03)98452831 or email They will confidentially try to help as best they 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. 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 MLD Foundation in collaboration with ALDS. Check with your tax consultant about the deductibility of any expenses associated with this conference.


ALDSShire HGT Mac's Team     
Thank you to our collaborators, sponsors, and donors 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 MLD Foundation so you are only paying for direct costs.

Register for the MLD Family Conference™ Online Registration closes March 11th.


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

ALDS  Shire HGT  Mac's Team   Olivia's Walk