Charset MLD Family Conference™ - MLD Foundation
Education Faces of MLD

The Premier Family Resource for Metachromatic Leukodystrophy Information & Support


MLD'2007 Boston

Please join us as we gather MLD affected families, researchers, industry and other resources at our 2009 North American MLD Family Conference™ in Valley Forge, just outside of Philadelphia Pennsylvania on June 26-27th.

Early registration closes May 31st - Starting June 1st the current subsidized prices & hotel space cannot be guaranteed.

"I can't describe to you what it means to families to finally meet another family face to face at our conferences. 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."

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.

Quick links: AGENDA ... HOTEL ... COSTS ... INVITATION(PDF) Adobe PDF or Register for the Valley Forge MLD Family Conference™

Registration is open!

We will be providing a volunteer staffed respite room for your children and 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.

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Our host hotel is the beautiful, modern, three-diamond all-suite Embassy Suite Valley Forge - Philadelphia located about 20 miles NorthWest of Philadelphia, Pennsylvania (PHL). The hotel is well equipped for you and your MLD affected loved ones with full accessibility for wheelchairs. Each two room suite includes a refrigerator, microwave, coffee maker , wet bar, free internet, a king bed (& TV) in its own bedroom, a separate living room with a double sleep sofa and TV. Your breaks, lunch Saturday and both Friday and Saturday night's dinners are included in the modest registration fees. Hotel guests also will enjoy the Embassy cook to order breakfast buffet. Parking is free, but if you are flying you will be responsible for transportation costs to the Philadelphia airport. We will try to arrange free shuttles where that is practical. Conference rate is available 2 days before and 2 days after the conference.

Just minutes away is Valley Forge National Historical Park, the site of the 1777-1778 winter encampment of General George Washington’s weary and beaten Continental Army, and the birthplace of our Nation’s military. The stories of Valley Forge have all the David and Goliath drama of the underdog hanging tough in the face of great hardship, persevering and going on to win. We will get a taste of the region at a special dinner Saturday evening at a local establishment (details tba).

We're 5 minutes away from the King of Prussia Mall, the largest mall in America. It's 20-30 minutes to downtown Philadelphia with it's deep history, 30 minutes to Sesame Place, and 90 minutes away is Hershey, home of Hersheypark.

You can see our Valley Forge agenda here. Please note that this is a work in process as we confirm speakers and fine tune topics. Our final agenda from our March 2009 Munich conference can be seen here if you want a feel for what the Valley Forge agenda will look like once complete.

Shire HGT  Mac's Team  Mac's Team  The Stennis Foundation  Boinx Software  Thank you to our grant providers (Shire HGT), sponsors (Athena's Hope, Mac's Team, The Stennis Foundation) 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 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 Valley Forge MLD Family Conference™ Registration is open! Early registration closes May 31st - Starting June 1st the current subsidized prices & hotel space cannot be guaranteed.
The costs are outlined below. Please note that you will be responsible for your own travel arrangements and costs. Some scholarships will be available for those needing financial assistance.

1st adult & MLD affected family member - staying at the hotel $250 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 suite has king bed plus double pull-out sofa. Please contact us with special sleeping needs.
1st adult & MLD affected family member - NOT staying at the hotel $150 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
$ 75 includes all meals and conference notebook
Children (non-MLD, 12 years and younger)
$ 30 includes all meals and access to the respite room.
infants (ea)
free < 1 year old. Does not include respite room child care.
Reserve early to assure availability
for those driving
Airport Transportation
not included
Once we know your travel arrangements we will try to arrange several free shuttles.

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.

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

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.