Charset MLD Family Conference™ 2010 - Tokyo
Education Faces of MLD

The Premier Family Resource for Metachromatic Leukodystrophy Information & Support


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."

Registration will open July 3rd for our 2010 Tokyo MLD Family Conference™ at the Hilton Tokyo Bay on August 15th, 2010.

Please join us as we gather families and their MLD affected loved ones along with leading MLD doctors, researchers, scientists, and caregivers for a one day time of 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 MLD-affected loved one.

Download an INVITATION(PDF) Adobe PDF

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You can see our draft 2010 Tokyo agenda here.

The Conference starts at 9AM (a light breakfast will be served starting at 8:30) and runs until 6PM. We will provide breaks, lunch and a brief reception as we close the meeting.

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 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.
Your younger children will have a supervised separate room with games, DVD's, art, and other activities to help them enjoy their time, too.

Our host hotel is the four star Hilton Tokyo Bay on the waterfront adjacent to Tokyo Disneyland.

We strongly recommend you stay at the hotel Saturday night before the conference so you and your family are well rested Sunday morning.

You must reserve your own room at the hotel.

We suggest you coordinate your visit with the Kapua Seminar on Saturday afternoon the 14th. Attendance at the Kapua Seminar will make you eligible for a significant room discount and they will provide some transportation cost reimbursement. Please contact Hiroshi Takahashi for details. You may extend your visit to include Sunday and/or Friday nights at a Seminar discounted rate.

HOTEL - pictures
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A light breakfast Sunday morning, Sunday lunch, and a light reception as we close the Conference are included in your conference registration. We will also have two included breaks during our sessions.

You are responsible for your own transportation. Please also refer to the Hotel & Kapua Seminar information (above) for details about a partial expense reimbursement that may be available.


The Hilton Tokyo Bay is immediately adjacent to Tokyo Disneyland.


Registration opens July 4th. Please register early so we can plan appropriately.

Family registration fee ¥5,000 includes up to 3 adults, all of your non-MLD children, & all MLD-affected family members, all Sunday breaks, lunch, light breakfast and light reception after the event.

Most of the actual conference expenses are paid for thanks to our generous donors and sponsors!

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

Some scholarships will be available for those needing financial assistance.

Register for the MLD Family Conference™


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 email. 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 and accommodate a refund.

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. Check with your tax consultant about the deductibility of any expenses associated with this conference.


Shire HGT Mac's Team  The Stennis Foundation  Boinx Software  Thank you to our grant providers (Shire HGT), sponsors (Mac's Team, The Stennis Foundation, Olivia's Walk) and service provider partners (Boinx Software), 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.

THANK YOU - Mr. Takahashi

MLD Foundation would like to thank Mr. Takahashi for his extensive efforts to help us coordinate our first MLD family Conference in Japan and for his efforts in organizaing the MLD-affected families in Japan. Without his extensive efforts this conference would not be possible.

Register for the MLD Family Conference™


Questions? ... Contact Hiroshi Takahashi <> +81 3 3358 2154

Shire HGT Mac's Team  The Stennis Foundation  Boinx Software