Education Faces of MLD

The Premier Family Resource for Metachromatic Leukodystrophy Information & Support





Pinterest Follow



DONATE NOW!
Donate Now
Supporting Compassion for families, Awareness, Research, and Education.
 

MLD Family Conference

"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."

2016 MLD Family Conference™ in Tarrytown, New York – July 15-16th.

Special Guests & Topics:
- Shire and GSK discussing next steps for their clinical trials.

- Dr. Allesandro Aiuti talking about the Milano Gene Therapy Clinical Trial.
- Dr. Alessandra Biffi and her new work in Boston
- Prof. Michael Gelb sharing about the MLD newborn screening pilot study
- Patient Powered Research & the MLD Registry
- Acupuncture, Essential Oils and Cannabis (CBD) Oil to optimize quality of life


AGENDA <-- click to see full agenda

Thursday evening or Friday AM – arrivals

Friday –10am start – includes lunch and a very casual welcome dinner

Saturday – 9:30am - 5pm including a Butterfly release & ending with a 15th Anniversary Dinner Party

Sunday – departures

377 days ago we gathered in Tarrytown, New York.

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.

Conference videos have been uploaded. Click here to view them.

Registration Closed
Click to email us
  Online registration for this conference closed on Sunday, June 12. 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 the 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 2016 - Tarrytown, NY agenda can be seen here.

Last year's final agenda: 2015 Newark, DE. Note the flow and times may be different from last year's agenda. The format will be very interactive and will likely include video calls to several international researchers.

RESPITE ROOM

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 near our meeting room for 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 - healthy and affected. Tammy and John return to lead two full days of games, art, music and other activities to help the kids them enjoy their time, too.

YOUTH PROGRAM

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

HOTEL - overview

Our host hotel is the Doubletree Tarrytown, a Catergory 5, 4-star, 2015 TripAdvisor Certificate of Excellence Award star hotel located in Tarrytown, New York.

The DoubleTree by Hilton Hotel Tarrytown is located in a historic town in the suburban Westchester County business corridor. Enjoy the lodge-style lobby with its two fireplaces and a complimentary warm chocolate chip cookie. Many guest rooms overlooks the park-style interior courtyard. Unwind by walking through the 11 acres of landscaped grounds and nearby historic parks, or play a relaxing game of golf on one of the nearby courses. Pamper yourself with a treatment at Tatiana Day Spa, or work out at the fully equipped fitness room and large heated swimming pool. The local area is steeped in history including Sleepy Hollow, located within walking distance. Quaint shops, small boutiques, and scenic waterfront add a picturesque element to charming Tarrytown. If you're looking for big city action, take the 30 minute train ride to New York City - our shuttle will take you to the train station and pick you up upon return (Monday through Friday). Take advantage of complimentary WiFi and a well-lit workstation in your guest room.

Either a single king or two queen beds are available - please specify your preference during registration.

[read more on the hotel web site ...]. Click here to see photos.



PLEASE NOTE - DO NOT contact the hotel directly for reservations, all reservations must be made via the MLD Foundation to be part of our room block.

455 South Broadway, Tarrytown NY 10591 ... map to the hotel

+1-914-631-5700

Check In: 3pm, Check Out: noon

Both room styles sleep a maximum of four people. Optional roll-away beds and cribs are 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 of $180 has been extended 3 days before and 3NovatoScottsdale, AZMS days after the conference if you wish to stay in the area for any extra time.

PLEASE NOTE - DO NOT contact the hotel directly for reservations, all reservations must be made via the MLD Foundation to be part of our room block.

MEALS

Lunch and dinner both Friday & Saturday are included in your registration. A light breakfast will be served in the meeting area on Saturday morning..

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

Saturday's dinner will include a special event at the hotel featuring the children.

ATTIRE & WEATHER AVERAGES

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

average high of 85, low of 68 with occasional thunderstorms during July.

TRANSPORTATION & PARKING

Parking is free for those driving.

If you are flying you will be responsible for transportation costs from your home city to New York - LaGuardia, which is about 40 minutes (28 miles) away.

If you advise us of your itinerary in advance, we will try to arrange free shuttles to and from New York - LaGuardia airport.

LOCAL ATTRACTIONS

Enjoy easy access to the corporate business corridor of Westchester County. Take time out to see some of the local sights, dine at the restaurants or simply relax. Explore Lyndhurst Castle – an example of a Gothic Revival mansion from 1838. Visit the house and gardens of Kykuit, the home to four generations of the Rockefeller family. Explore Washington Irving's home at Sunnyside and learn more about the author of The Legend of Sleepy Hollow, or enjoy a romantic dinner at the restaurants of Hastings-on-Hudson. Shop at The Westchester in White Plains, featuring 890,000 sq. ft. of premium shopping. Hunt bargains at the Woodbury Common Premium Outlet. Attend a show at the Tarrytown Music Hall, or try your luck on the tables and slots at Empire City Gaming at Yonkers Raceway.

COST

Online Registration closes Sunday, June 12.
Prices are holding constant from last year!

It's very helpful for our planning if you register now, even if you want to defer payment a bit. Payments are due June 6th and scholarships are available - see the tab below this one.

1st adult - staying at the hotel $200 includes first adult & all MLD-affected family members, two nights at hotel, lunch & dinner Friday, all meals Saturday, and a copy of the conference proceedings. Both room styles sleep a maximum of four people. Optional roll-away beds and cribs are available..
* This price is only for families with a MLD loved one.
1st adult - NOT staying at the hotel $185 includes first adult & all MLD-affected family members, same as above but does NOT include hotel room.
Additional Adult Guests
$110 includes all meals and, if requested, an additional conference notebook. Up to 4 people per room
Guests from for-profit companies
$700 flat rate registration includes up to two nights hotel, all meals, and conference notebook. Please note that industry costs are not subsidized.
Youth/Children
(eating adult meals)
$40 includes all meals, supervised youth program (if enough interest is expressed), and access to the respite room.
Children
(eating child's meals)
$20 includes all meals and access to the children's/respite room.
infants (ea) free < 1 year old. Does not include child care or meals.
Roll-away beds $0 Reserve early to assure availability.
Cribs $0 Reserve early to assure availability.
Parking no charge
Airport Transportation not included Once we know your flight itinerary we will try to arrange free shuttles to and from the airport for you.
Extra Nights $180 This room rate has been extended 3 days before and 3NovatoScottsdale, AZMS 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 to get to Tarrytown.

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

Registration Closed
Click to email us
  Online registration for this conference closed on Sunday, June 12. 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 the 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. ***

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

Registration Closed
Click to email us
  Online registration for this conference closed on Sunday, June 12. 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 the 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. ***

QUESTIONS

Questions? ... Contact Teryn Suhr <Conference-2016NY@MLDfoundation.org> +1 503-656-4808


Thank you to our SPONSORS, DONORS, & GRANT PROVIDERS

Shire Pharmaceuticals   Believing For Bryleigh   Shire Pharmaceuticals  

Thank you to our generous sponsors and grant providers ( Shire Pharmaceuticals, Believing For Bryleigh, Shire Pharmaceuticals) 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 the MLD Foundation – and you are only paying for a small portion of the direct costs.

2016 NY 2 2

 

Home | About Us | Contact Us | Disclaimer | Privacy Policy | Legal-Trademarks | (c) 2000-2017 MLD Foundation