Charset MLD Family Conference™ 2010 - Cleveland 2010
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."

2010 MLD Family Conference™ in Cleveland, Ohio – August 6th & 7th, 2010.

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.

Download an INVITATION(PDF) Adobe PDF

Register for the MLD Family Conference™
Online Registration closes July 13th.

Click the header to open & view each panel...


You can see our 2010 Cleveland agenda here.

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.
If you express interest, we will try to put together a separate youth program (ages 11 and up) with age appropriate activities.
HOTEL - information

Our host hotel is the brand new, three-star Hilton Garden Inn, Mayfield Village located about 15 miles east of downtown Cleveland, Ohio just off highway 271. The hotel is well equipped for you, your family, and your MLD affected loved one(s). Each room includes a refrigerator, microwave, coffee maker, free internet, and a 32" flat screen TV. A fitness center and indoor pool are also available.

Hotel rooms sleep a maximum of five people due to fire regulations. If your party needs a second room please let us know so we can make special arrangements and offer a discount if available.

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 has 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
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Dinner Friday and both lunch & dinner on Saturday are include in your registration. Hotel guest will also enjoy breakfast each morning of their stay.

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

Friday's 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. Transportation will be provided for those without cars.


Parking is free for those who are driving.

If you are flying you will be responsible for transportation costs from & to Cleveland-Hopkins airport, which is about 28 miles away. We will try to arrange free shuttles to and from the airport where that is practical.

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


Just 20 minutes away is the home of the Rock and Roll Hall of Fame, The Great Lakes Science Center, Cleveland Browns Stadium, the Cleveland entertainment district, and the new Progressive Field, home of the Cleveland Indians. Whitehaven Memorial Park is just a short 1/4 mile walk.

We will get a taste of the region at a special dinner Saturday evening at a local establishment (details tba).

Online Registration closes July 13th.
Conference fees are down 30% from 2009 thanks to our generous donors and sponsors!

1st adult - staying at the hotel $175 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 room has one king or two queen beds - max 5 persons. Please contact us with special sleeping needs.
1st adult - 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
$ 50 includes all meals and conference notebook
(eating adult meals)
$ 30 includes all meals, supervised youth program (if enough interest is expressed), and access to the children's room.
(eating child's meals)
$ 20 includes all meals and access to the children's room.
infants (ea)
free < 1 year old. Does not include child care or meals.
Cribs or rollaways
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.

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

Some scholarships will be available for those needing financial assistance.

Register for the Valley Forge MLD Family Conference™
Online Registration closes July 13th.


We want everyone that wants to attend to be able to. If you need assistance with registration or travel expenses please let us know. 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. 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   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 MLD Foundation so you are only paying for direct costs.

Register for the Valley Forge MLD Family Conference™ Online Registration closes July 13th.


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

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