The 6th US MTM-CNM Family Conference was held in
St. Louis, MO
July 19-21, 2019

Thanks for joining us as we ventured "through the gateway" and encountered a world of "expanding possibilities"!​

Download the 2019 MTM-CNM Family Conference Program book!
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Hotel Information
MTM-CNM Family Connection is thrilled to be partnering with the Hilton St. Louis Airport for this year's conference venue! We have secured a block of rooms at a special discounted rate of only $110/night (+tax).

​Book your hotel reservations easily online by clicking here to secure the conference rate. If you have special requests, such as a preference for a handicap accessible room, please make your reservation by calling our hotel contact Natalie directly at (314) 942-6970.
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The Conference rate is available from July 17th though July 22nd for those wishing to extend their stay a bit, and includes complimentary in-room Wifi and on-site parking.
Be sure to book your rooms asap to guarantee a spot in our block, which is being held until July 1st. After July 1st, reservations will be subject to space and/or rate availability at the hotel, which might sell out. Don't wait!

​If you have any additional questions, you can also contact our team at [email protected].
​A few highlights of the Hilton St. Louis Airport:
  • Just minutes from the airport, easy access to highways and public transit
  • Wheelchair-accessible shuttle available for transportation between airport and hotel (contact the front desk ahead of time to make your arrangements)
  • Plenty of free open-air parking that can accommodate vehicles of any size
  • Indoor pool, with accessibility lifts
  • Recently renovated meeting space and guest rooms
  • Restaurant and bar/lounge onsite
Conference Registration is Now Closed
Registration Deadline: July 5th, 2019
Please note that Conference Registration is separate from making your Hotel Reservation.  Registration is required for all conference attendees, and onsite registration is not available.  Included in your registration is a conference T-shirt, dinners Thursday through Sunday, lunch Saturday and Sunday, all kids activities and all conference events, presentations, and workshops.

Registration Fee Schedule for 2019:
  • Individuals diagnosed with MTM/CNM....Free
  • Adults 18 and over..........................................$100--->Now $125
  • Children 12-17...................................................$50---->Now $75
  • Children 4-11.....................................................$25
  • Children 0-3.....................................................Free
  • On July 1, fees increase by $25 for adults and $15 for kids 4-17
Families joining our fundraising team can get $100 off of their family registration for every $500 they raise!
Be sure to subscribe to our Newsletters to ensure you receive the latest news regarding the conference - see you in St. Lou!


​Thanks to a RARE Patient Impact Grant from Global Genes, a limited number of travel grants are available to help families with the cost of getting to St. Louis for the conference! 
Conference Agenda/Outline
The detailed agenda is available for download here, below is a general outline that was previously shared.
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Note: All activities being planned in conjunction with the St. Louis conference for our MTM-CNM community will be coordinated through MTM-CNM Family Connection. If you have additional suggestions or requests for the conference planning team to consider you may email us at any time at [email protected]
Thursday July 18th
  • Informal outings to St. Louis area attractions
  • Special  pre-conference orientation and welcoming session for "new families" (1st time Conference attendees, and/or newly diagnosed)
  • Community dinner!  Since many families choose to arrive early and get settled in to the hotel before the Conference program kicks off on Friday, this will provide an opportunity to start relaxing and enjoying each other's company
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​Friday July 19th
  • Conference program kicks off Friday afternoon with  sign-in and Community Connections opening reception
  • Community dinner and evening program

​Saturday July 20th
  • Scientific and medical presentations
  • Special interest workshops
  • Kid's activities and entertainment
  • Lunch
  • Group Photo
  • Community dinner and Variety Show/Coffeehouse
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​​Sunday July 21st
  • Continued presentations
  • Lunch and Conference program wrap up
  • Post-conference community dinner for those choosing to remain

Monday July 22nd​
  • Informal outings to St. Louis area attractions
Getting to the Conference
We have picked this location and venue with the intent of being as accessible as possible to as many families as possible.  Still, we recognize that any amount of travel with a family member impacted by MTM/CNM can be challenging.  Most families attending previous conferences have had to travel significant distances and are happy to share travel tips based on their experiences either flying or driving.  In addition to the tips below, feel free to join our closed Facebook group "MTM-CNM Family Conference" for great family-to-family sharing.

In General:
  • Plan ahead, make a budget, plan your itinerary.
  • Discuss your travel plans with your loved one's physician and make sure their medical needs will be taken care of.
  • Make a checklist of essential items, including backups/spares as needed.

Driving:
  • Plan your route with Google Maps or similar.  Plan ahead for points of interest, as well as any major hospitals or resources you might need along the way.
  • Consider how many hours you want to drive before stopping overnight.  Take some "practice trips" if your loved one with MTM/CNM has not spent long hours in a car before.
  • Special considerations should be made for safe transportation if your child is not able to use a regular car seat or seat belt.  There are resources to help.  See this policy statement from the American Academy of Pediatrics.
  • Gas prices can vary greatly from one state to the next - use a site such as Gas Buddy to help plan your fuel stops and estimate total fuel costs.
  • Take advantage of hotel chain loyalty programs- for example, Hilton Honors - and book any nights on the road ahead of time.
  • Got a birthday or other special occasion coming up?  Ask family and friends for gift cards for gas, hotel points for a free night, or other ways to help with the expenses.

Flying:
  • Arrange with the hotel for complimentary shuttle service (wheelchair accessible) to and from the airport.
  • Tips for Flying with a ventilator (written by Burke and Krista following the 2013 Conference)
  • Manufacturer-specific links for ventilator air travel: Trilogy, LTV​
We hope you will be able to join us at the 2019 MTM-CNM Family Conference!  This will be the 6th biennial conference in the United States, and promises to be the best one yet!  Don't forget...
  • Sign up for our newsletters to get the latest information as soon as it is available
  • Help out with fundraising any way you can
  • Stay in touch via email or Facebook
  • Start making your personal travel plans to get to St. Louis this July!

Thank you to the 2019 MTM-CNM Family Conference Sponsors!

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