Education Faces of MLD

The Premier Family Resource for Metachromatic Leukodystrophy Information & Support



 
"*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."

2019 MLD Family Conference™
It's the only MLD-specific conference...

In just 9 days we'll gather in Franklin, Tennessee.

Friday June 28th thru Saturday June 29th

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, friendship, live hugs and an unforgettable time!

All MLD families are invited, whether you currently have an MLD affected loved one or an angel! There will be plenty of group and one-on-one time to meet the other families and the doctors. Leave the weekend with new friends, new knowledge, and practical inspiration & ideas! 

How do we get from a lab test to screening babies? How can you help in your state?

The
MLD Newborn Screening Academy will be Saturday morning July 27th at 9:30 at the MLD Family Conference™
Click to learn more


Join the Livestream - see below!

Please return to this page on Friday June 28th to see and participate in a live webcast. We will also be livestreaming the MLD Butterfly Release late Saturday morning and the Parade of MLD Champions during the first 30 minutes of Saturday evening's dinner.

Enter your email and/or mobile number to pre-register for the livestream ... it's free!

Email:
Mobile phone:


By submitting this information I give permisson for MLD Foundation to send livestream & MLD Foundation updates. Your email and/or mobile phone number will never be shared or sold.

AGENDA <-- click to see full agenda

LIVESTREAM HOURS:
- Friday June 28th from 9:30 am to 5 pm
- Saturday June 29th from 9:30 am to 5 pm ... We will also livecast the Parade of MLD Champions at 7pm
All times CDT, same as Chicago

We're heading south this year to Tennessee for our 2019 MLD Family Conference™! Join us in historical Franklin, TN –  just 20 minutes south of Nashville, home of the Grand 'Ole Opry.

Registration costs are the same as last year. Early registration includes free Thursday night! We'll have plenty of social time, highly-interactive sessions as well as some special breakout sessions!

Check in Thursday and get settled before the conference starts Friday morning.

We urge you to make your travel plans early, especially if you are flying in, to keep travel costs down. The closest airport is Nashville (BNA) with lots of good airline service. Memphis and Chattanooga are under 3 hours with Atlanta, Birmingham, Indianapolis and Cincinnati just a 4-hour drive – another hour reaches St. Louis and Indianapolis.

MLD Family Conference™

AGENDA <-- click to see full agenda

Thursday – arrivals

Friday – 9:30 am start – includes light breakfast, lunch and a casual welcome dinner

Saturday – 9:30 am - 5 pm followed by a MLD Family dinner celebration ... includes all meals

Sunday – departures

Registration Closed
Click to email us
  Online registration for this conference closed on Wednesday, May 29. If you would still like to register we will try to accommodate you as best we can. Please contact us via email or at +1 503-656-4808.

LIVE WEBCAST: There will be plenty of space on the free live webcast, which will appear on this Conference Overview page during the conference.

*** We are sorry, due to planning and space constraints we cannot accommodate on-site registration or walk-in attendees. ***

SHARE this Conference:

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

AGENDA

The working 2019 - Franklin, TN agenda can be seen here.


RESPITE ROOM

We will be providing an experienced 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 in a room near our meeting room for easy access and your peace of mind. You will be responsible for all medications, feeding, and toileting.


CHILDREN & YOUTH - POLICY

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.


CHILDREN'S PROGRAM

We will again have a structured children's program for all children - both healthy and affected. We have experienced leaders planning two full days of games, art, music and other activities to help the kids enjoy their time, too.


YOUTH PROGRAM

If you express interest and there are enough youth registered, we will try to put together a separate youth program (ages 11 and up).


HOTEL - overview

Our host hotel is the Hilton Franklin - Cool Springs, a 4.5 star (TripAdvisor) hotel located in Franklin, TN

601 Corporate Centre Drive, Franklin TN 37067 ... click for map to the hotel
+1-615-771-1995
Check In: 3pm, Check Out: 12pm

The hotel specifies a maximum of 4 people in a king room (3 in the bed plus one in roll-away) or 4 in a double queen room. Rollaways are available only in king rooms. Note: only the queen rooms have tubs.

PLEASE NOTE - DO NOT contact the hotel directly for reservations or special requests, all reservations and requests must be handled directly by MLD Foundation.

Franklin is just 20 minutes from Nashville and home to upscale shopping and southern history. Enjoy the rolling hills of Tennessee, an elevated outdoor heated pool with large terrace and fireplace, and a Precor fitness center.

In the guest rooms, each detail has been designed to create a relaxing environment during your stay. King rooms have oversized desks and showers, while deluxe two queen-bed rooms provide plenty of space and tubs. Each guest room features a 49-inch HDTV, a refrigerator, in-room safe, iron, ironing board, hair dryer and coffeemaker – everything you need to feel at home. Please specify your bed preference during registration. The entire hotel is non-smoking.

[read more and see photos on the hotel web site ...].

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 of $190 has been extended 3 days before and 3 days after the conference if you wish to stay in the area for any extra time.

MLD Family Conference™

MEALS

Your registration includes continental breakfast, lunch & dinner on Friday, ... and breakfast, lunch & dinner Saturday.

Please specify special dietary needs when you register (gluten free, diabetic, vegetarian), and whether child, adult, or no meals are needed.

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


ATTIRE & WEATHER AVERAGES

Conference attire is casual. However, while it may be warm and humid outside, hotel meeting rooms can often be cool so please consider a light sweater for the meeting rooms.

Average June highs in Nashville are 86 with average lows of 63 and occasional thunderstorms.


TRANSPORTATION & PARKING

Parking is free for those driving.

If you are flying you will be responsible for transportation costs from your home city to Nashville, TN, which is about 25 minutes (20 miles) away.

If you advise us of your itinerary in advance, we will try to arrange free shuttles to and from Nashville, TN airport.


LOCAL ATTRACTIONS

Experience quintessentially American charm and history when you explore Franklin, TN. Stroll through old Downtown Franklin, where you can visit the Franklin Theatre, Civil War homes, and museums. Visit Cool Springs Galleria Mall, stop by local sports complexes or take a trip to Downtown Nashville, home of great music, the Ryman Auditorium, and the Grand ole Opry, which is only 20 minutes away.


COST

Online Registration closes Wednesday, May 29


Prices are holding constant from last year!

Scholarships are available - see the tab below this one.

1st adult -
staying at the hotel
$200

Includes first adult and all MLD-affected family members, 2 nights at the hotel , meals as described above and a conference folder.
* The hotel specifies a maximum of 4 people in a king room (3 in the bed plus one in roll-away) or 4 in a double queen room. Rollaways are available only in king rooms. Note: only the queen rooms have tubs.
* This price is only for families with a MLD loved one – including MLD angels!

1st adult -
NOT
staying at hotel
$200 Includes first adult & all MLD-affected family members, same as above but does NOT include hotel room.
Additional Adults
$110 Includes meals as above, and a conference folder.
* Note room occupancy limits in Hotel section, above.

Guests from for-profit companies
$800 Includes up to two nights hotel, includes meals as above, and a conference folder.
* Please note ... per conflict guidelines, industry costs are not subsidized and free early-bird night is not available.
Youth/Children
(eating adult meals)
$40 Includes meals as above, supervised youth program (if enough interest is expressed), and access to the children's/respite room.
Children
(eating child's meals)
$20 Includes meals as above and access to the children's/respite room.
Infants free < 1 year old. Does not include child care or meals.
Roll-away beds $0 (King rooms only) Reserve early to assure availability.
Cribs $0 Reserve early to assure availability.
Parking no charge
Airport Transportation   Once we know your flight itinerary we will try to arrange free shuttles to and from Nashville, TN (BNA) airport for you.
Extra Nights $190

Our conference room rate has been extended 3 days before and 3 days after the conference if you wish to stay in the area for any extra time.

 

Please note that you will be responsible for your own travel arrangements and costs from your home town to Franklin.

Limited travel and conference scholarships will be available for those needing financial assistance. Please go ahead and register. Enter your confidential scholarship request on the bottom of the registration payment page.

Register Now
Online Registration closes Wednesday, May 29


SCHOLARSHIPS & FINANCIAL ASSISTANCE

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.

Please go ahead and register. Enter your confidential scholarship request on the bottom of the registration payment page.


CANCELLATION POLICY

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.


QUESTIONS

Questions? ... Contact Teryn Suhr <Conference-2019TN@MLDfoundation.org> +1 503-656-4808


Thank you to our SPONSORS, DONORS, & GRANT PROVIDERS

Honoring Olivia   Takeda   Orchard Therapeutics   Homology Medicines   Believing For Bryleigh  

Thank you to our generous sponsors and grant providers ( Honoring Olivia, Takeda, Orchard Therapeutics, Homology Medicines, Believing For Bryleigh ) 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 – and you are only paying for a small portion of the direct costs.

2019 TN D-0 O-0