What Should Fellows Expect?

  1.  To represent the ALS patient voice

First and foremost, people with ALS acting as Patient Fellows at these meetings are just that, people living with ALS. These meetings are primarily aimed at the science and allied health professional communities, and the goal of this program is to provide a voice of the patient into the meetings, and importantly after the meetings back to other people with ALS.

  1. Professional Support in advance of Symposium

  • Fellows selected will be paired with a member of the selection committee (their “Fellowship Mentor”) for at least four individual preparation meetings (phone, Skype, etc) and three group meetings with the other fellows and full selection committee.
Proposed Fellowship Support Schedule
August ·         Lodging Requests Done.

·         Assignment of Fellowship Mentor and Fellowship Coordinator

·         Group Fellowship Call/Skype

·         Mentorship Call/Skype

September ·         Mentorship Call/Skype
October ·         Group Fellowship Call/Skype
November ·         Mentorship Call/Skype
December ·         Attend Meetings as Patient Fellow

·         Mentorship Call/Skype

·         Post Articles/Blogs/Videos

·         Group Fellowship Call/Skype

January ·         Post Articles/Blogs/Videos

·         Fellowship Program Survey Completed

·         Fellowship Completion Plaque Presentation

  1. Professional Support during Symposium

  • This Coordinator is not a care provider, if needed, Fellows must provide arrangements for their own care providers.
  • Fellows will be provided with a Fellowship Coordinator during the meetings they attend. The Coordinator will assist when needed Fellows getting to and from the meetings they want to attend and assist them in meeting and interacting with presenters or members of the audience when needed and to the best of their ability.
  1. Access to meetings.

  • All conferences take place at the Westin Waterfront in Boston, MA.
  • The Westin is a relatively new and very accessible hotel and conference center. The Symposium occurs mostly between several adjacent large ballrooms on the concourse level of the hotel.
  • Fellows (and one care provider or guest) will be registered for the Symposium as a regular attendee. All attendees pay a registration fee, that range between $500-$1000 depending on when a person is registered. These fees will be covered for those selected as Fellows.
  1. Meals

The following outlines meals provided as part of the Meeting Registrations paid to the MND Association and through donations made directly in support of the Fellowship Program. If a Fellow needs specific nutritional arrangements, they should inform their Coordinator in advance of the meeting and that Coordinator will make all reasonable efforts to accommodate Fellow’s needs – we get it! You have ALS and sometimes can’t eat the same stuff “other people” do!

Dec 7 Dec 8 (international Symposium) Dec 9(international Symposium) Dec 10(international Symposium)
Coffee Breaks Morning & Afternoon Morning & Afternoon Morning & Afternoon
Lunch Included Included Included
Dinner Fellowship Hosted VISA Card Provided VISA Card Provided Not included

 

  1. Lodging

Fellows will be provided lodging at the Westin or a nearby hotel, for the evenings of December 7, 8, and 9.  Lodging arrangements will be settled upon quickly after selection is made. If Fellows wish to extend their stay on either end of their Fellowship, they will need to inform their Fellowship Coordinator at the time of their booking in order to assure rates and not having to swap rooms/hotels, etc.

  1. Transportation

Fellows are responsible for the costs to get them to Boston, whether that be via plane, train or other means.

ALS TDI has partnered with Compassionate Care ALS to have wheelchair accommodating vans available to Fellows for transport to and from the airport or local train station (ie South or North Station in Boston), and from their accommodations or the Westin to receptions or meetings not located at the hotel they will be lodging at. As these vans will be in very high demand, specific arrangements regarding pick up and drop off will be arranged in advance with the CCALS team and the Fellow’s Coordinator. We cannot guarantee that a van will be available to transport a Fellow to places other than those required for their Fellowship, however, in partnership with CCALS we will always try, but Fellows should assume that they may need to cover their own transportation costs and make their own arrangements sometimes.

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