Charset Metachromatic Leukodystrophy Education - MLD Foundation
Education Faces of MLD

The Premier Family Resource for Metachromatic Leukodystrophy Information & Support


MLD'2007 Boston

Please join us October 19th and 20th, 2007 in Boston Massachusetts for MLD Foundation's 2007 MLD Family Conference™ as we meet to learn about current MLD research, progress towards a MLD cure, how to care for your MLD affected family member ... and most importantly to renew old and make new friendships!

Boston is the home of Massachusetts General Hospital, Harvard, Paul Revere's Ride, and the Boston Red Sox to name just a few of the local attractions and history.

See the agenda here <-- click here

The September 30th registration deadline has passed.
We have finalized our room commitment with the hotel. While we can continue to accept registrations for a few more days, we will not be able to guarantee hotel accomodations or pricing for Registrations after the deadline.
You may contact us here.

Can't attend? Please consider making a scholarship donation to help others attend by clicking below


You and your MLD family member are cordially invited to the MLD Family Conference™ -- MLD'2007-Boston. We will be meeting Friday afternoon and all day Saturday at the Embassy Suites at Boston Logan Airport just minutes from downtown Boston. We have an exciting agenda for you! A few highlights:

Three different research projects will be represented ... enzyme replacement therapy (ERT), gene replacement therapy, and stem cell/bone marrow transplant therapy. Two of the three are in clinical trials now, and the third, gene therapy, is planning on a 2008 trial.

Featured speakers include Dr. Charnas, Dr. Sessa, Dr. Escolar, Dr. Fogh, Dr. Eichler, Dr. Orchard, Dr. Hauer, and Dr. Richard.

Practical Care, Palliative Care, and Pain Management - an afternoon session on how to best care for your MLD affected family member

A special session on PGD/IVF (preimplantation genetic diagnosis/in-vitro fertilization).

A special hosted Boston New England-style dinner in Boston Saturday evening and a casual pizza/salad gathering Friday evening.

Two nights stay in the 3-star Embassy Suites all suite hotel with all meals included!

A respite care room will be provided for your MLD affected family member, if you want to use it, so that you can relax and enjoy the session knowing that your family member is well taken care of.

The MLD Family Conference is not a fund-raiser for MLD Foundation so you are only paying for direct costs. Included in your registration is the following:

Two nights at the Embassy Suites, a 3-diamond hotel right next to Boston's Logan Airport. Maximum room capacity is 6.

A hosted Friday evening pizza & salad social to get to know other family members and some of our guest speakers.

Cook to order breakfast Saturday and Sunday.

Breaks on Friday and Saturady, and lunch on Saturday.

A hosted New England-style dinner on Saturday night in Boston (details shortly - includes transportation, no-host for alcoholic beverages)

Transportation to and from Logan and Saturday's dinner.

A copy of the conference handouts and follow-up materials.

Access to the family member respite care room.

Snacks during our Friday and Saturday breaks.


Registration is underway. Space is limited so please register early. You can register on-line or by US Mail. Please do not call the hotel directly to book your room - reservations must be made through MLD Foundation.

Our room block will be held until September 30th after which they may be released to the general public and space cannot be guaranteed. In addition, registrations made after September 30th may be subject to additional fees that are passed on by the hotel.

The cost is $325 for the first person including the 2 nights hotel room (Friday & Saturday), all meals and the handouts. This represents only a portion of our direct costs after reductions based on grants generously provided by Shire HGT and Zymenex for this meeting.

Thank you to our sponsors Shire HGTand Zymenex, and The Stennis Foundation who through their grants made this conference much more affordable for the attending families.
We also want to thank the families who individually donated
for their support of our scholarship fund.

Additional adults in the same room are $75 each and children are $30 each - includes all meals, handouts and access to the MLD Family member care room. Meals included are all breaks, Friday dinner, Saturday cook to order breakfast, lunch, and dinner offsite. Non-eating family members are only $15 each to help defray the respite room costs.

If you reserve by September 30th, and the hotel still has space available, they will extend our conference room rate for check in as early as Wednesday and checkout as late as Monday. These extra days are not being subsidized and the cost per additional night is $195.

We have some funds available for scholarship help. Please let us know if you need some assistance to attend the conference - also - if you wish to help support the scholarship fund, your tax-deductable donation is greatly appreciated!

We have arranged a great rate at this 3-star hotel, however, if you wish to stay at a different hotel on frequent stayer points or with friends or family, please let us know. You may miss some of the casual social interaction and opportunity to talk with the scientists and doctors, but are welcome at all of the events, including the first night social at the host hotel. The cost for the first person if you are not staying at the Embassy is $125. (Please keep in mind The Embassy's daily parking fee of $20 is not included in registration.)

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.

Registration is closed

Questions? ... Contact Dean Suhr <> 800-617-8387 or 503-656-4808

This conference is being organized by MLD Foundation. Check with your tax consultant about the deductibility of any expenses associated with this conference.