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2024 MLD Family Conference®
It's the only MLD-specific conference...
Days Until We Meet Again!
Kansas City, Missouri (USA) ... Friday June 21st thru Saturday June 22nd
We're completing the final hotel negotiations so we're not quite ready to announce the city and date ... stay tuned!
Please join us as we gather the MLD Family™ 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!
“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.“
COMING SOON – Date, Hotel, and Registration Details
Registration COMING SOON!
REGISTRATION OPENS Monday, April 1st
VIRTUAL REGISTRATION OPENS Saturday, June 1st
VIRTUAL REGISTRATION OPENS
Monday, June 10th!
Please join the MLD Family Conference® virtually via interactive Zoom. Learn about MLD, therapies, newborn screening, Understanding Grief, Making Memories & Creating A Legacy, Exploring Communication /ACC & AT Devices, Meeting the Needs of Siblings, and the Gift of Inclusion. (click here for current agenda topics)
You can participate via chat and share your questions live if you wish.
Registration is Open!
Join fellow MLD families and experts to learn, share, and connect. Details are below.
Get Thursday night free with an Early bird registration – available until May 6th
In-Person Registration CLOSES FRIDAY May 31st
Registration is Temporarily Offline
Please try back in a few hours. Thank you for your patience while we make the registration process even better!.
Virtual Registration is Open!
Join fellow MLD families and experts to learn, share, and connect. You will be able to virtually attend all sessions, except the breakouts. We will be streaming the MLD Butterfly Ceremony™ and the parade of MLD loved ones at the MLD Family™ celebration dinner Saturday evening.
We all know diagnosis before symptoms is the gateway to the best outcomes with therapies. Newborn Screening is the best way to diagnose early. But newborn screening is so much more than just a lab test. How do we get MLD NBS launched in every state and country? How do we help public health implement MLD NBS? How do we get on the federal, state and international screening lists?
Join us for the MLD Newborn Screening Academy™ to learn more, ask questions, and join the collaboration to implement MLD NBS in your state and country.
1:00 – 2:30 pm Friday 6/21 … Session I
8:30 – 10:00 am Saturday 6/22 … Session II
* Central Daylight time (Chicago)
AGENDA
Thursday – arrivals
Friday – 9:00 am start – includes light breakfast, lunch, a casual welcome dinner, and a special event for in-person attendees only
Saturday – 8:30 am – 5 pm followed by a MLD Family™ dinner celebration … includes all meals
Friday – 9:00 am start – includes light breakfast, lunch, a casual welcome dinner, and a special event for in-person attendees only
Saturday – 8:30 am – 5 pm followed by a MLD Family™ dinner celebration … includes all meals
8pm Special in-person only event
Sunday – departures
* Central Daylight time (Chicago)
We’re heading west to Missouri this year for our 2024 MLD Family Conference! Join us in Kansas City, a city which sits in both Kansas and Missouri.
We’ll have plenty of social time, highly-interactive sessions as well as some special breakout sessions!
EARLYBIRD BONUS – Register by May 6th and GET THURSDAY NIGHT FREE!
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 the Kansas City airport (MCI).
AGENDA (Click here for detailed agenda )
Thursday – arrivals
Friday – 9 am start – includes light breakfast, lunch, and a casual welcome dinner
Saturday – 8:30 am to 5 pm followed by a MLD Family™ dinner celebration – includes all meals
Sunday – departures
Friday – 9 am start – includes light breakfast, lunch, and a casual welcome dinner
Saturday – 8:30 am to 5 pm followed by a MLD Family™ dinner celebration – includes all meals
Sunday – departures
* Central Daylight time (Chicago)
FAQ & More Details
This accordion is for SHOW DETAILS = 0
AGENDA
We continue to refine and adjust the agenda to include more time to socialize, adding focused breakouts, and replacing boring one-way lectures with roundtable discussions & panels!
You can view this year’s working agenda here. Presenters will be added as they are confirmed and the final agenda may differ slightly. The conference format is very interactive and may include some remote video connections.
RESPITE ROOM
We will be providing an experienced volunteer staffed respite room for those affected with MLD so you can enjoy the presentations or 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 and/or youth programs. They cannot roam the hotel or swim unsupervised. You are responsible for your children and teens.
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).
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.
COST
Note: EARLYBIRD BONUS – Register by May 19th and GET THURSDAY NIGHT FREE! Earlybird Registration closes Sunday May 19th.
Also note … Your hotel room is included in the costs below – unlike most other rare disease conferences where you have to book and pay for your room separately! 😉
Prices are kept as low as possible through grants from our partners! The conference is not a fundraiser for MLD Foundation.
Limited 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. |
| 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 | $120 | 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) | $50 | 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) | $30 | Includes meals as above and access to the children’s program/respite room. |
| Infants | free | < 1 year old. Does not include child care or meals. |
| Roll-away beds | n/a | Not available |
| Cribs | $0 | Limited Availability |
| Parking | Included with Registration | |
| Airport Transportation | The hotel offers a free non-accessible shuttle and we will provide a mini-van for transportation. | |
| Extra Nights | $190 plus parking | 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 Kansas City.
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. Limited conference registration 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.
SCHOLARSHIPS & FINANCIAL ASSISTANCE
We want everyone that wants to attend to be able to. If you need assistance with registration or being able to attend please let us know. We will confidentially try to help as best we can. Limited scholarships are available
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 a MLD Family Conference 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.
This accordion is for SHOW DETAILS = 1
AGENDA
The current 2024 agenda is here. This Agenda is subject to change as final presenter confirmations are made.We continue to refine and adjust the agenda to include more time to socialize, and replacing boring one-way lectures with roundtable discussions & panels!
The conference format is very interactive and may include some remote video presentations.
RESPITE ROOM
We will be providing an experienced volunteer staffed respite room for those affected with MLD so you can enjoy the presentations or 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 and/or youth programs. They cannot roam the hotel or swim unsupervised. You are responsible for your children and teens.
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 Marriott Kansas City Airport, a hotel located in Kansas City, MO near the Kansas City airport.
775 Brasilia Ave,
Kansas City, MO, USA, 64153
+1 816-464-2200
Check In: 3pm, Check Out: 12pm
The hotel has King and Double Queen rooms with tubs and connecting rooms. Please specify on registration if a tub, connecting room or accessible room is needed.
Hotel parking is included with registration.
PLEASE NOTE – DO NOT contact the hotel directly for reservations or special requests, all reservations and requests must be handled directly by MLD Foundation.
The Marriott Kansas City Airport is located at near the Kansas City Airport. The rooms are well-appointed to ensure a comfortable stay with plush beds, complimentary high-speed Wi-Fi and HD SMART TVs, tasteful decor, a peaceful atmosphere, and superior service.
Their pool is inside to maintain comfort.
[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 has been extended 3 days before and 3 days after the conference if you wish to stay in the area for any extra time. Parking is extra.
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 Kansas City are 88 with average lows of 66 and occasional thunderstorms.
TRANSPORTATION & PARKING
Parking is included in registration for those driving.
If you are flying you will be responsible for transportation costs from your home city to Kansas City.
The hotel offers a free airport shuttle on a regular schedule. Their van is not handicap accessible and is not ideal for families with larger stroller and medical supplies. We will have a mini-van on standby to help you get from and back to the airport terminal.
LOCAL ATTRACTIONS
Zona Rosa Town Center and the St. Joseph Medical Center as well as the KCI Expo Center are nearby.
COST
Note: EARLYBIRD BONUS – Register by May 19th and GET THURSDAY NIGHT FREE! Earlybird Registration closes Sunday May 19th.
Also note … Your hotel room is included in the costs below – unlike most other rare disease conferences where you have to book and pay for your room separately! 😉
Prices are kept as low as possible through grants from our partners! The conference is not a fundraiser for MLD Foundation.
Limited 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. |
| 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 | $120 | 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) | $50 | 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) | $30 | Includes meals as above and access to the children’s program/respite room. |
| Infants | free | < 1 year old. Does not include child care or meals. |
| Roll-away beds | n/a | Not available |
| Cribs | $0 | Limited Availability |
| Parking | Included with Registration | |
| Airport Transportation | The hotel offers a free non-accessible shuttle and we will provide a mini-van for transportation. | |
| Extra Nights | $190 plus parking | 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 Kansas City.
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. Limited conference registration 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.
SCHOLARSHIPS & FINANCIAL ASSISTANCE
We want everyone that wants to attend to be able to. If you need assistance with registration or being able to attend please let us know. We will confidentially try to help as best we can. Limited scholarships are available
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 a MLD Family Conference 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 <[email protected]> +1 503-656-4808
