What is required of a host?
The primary role of a host is:
- To provide a location for the event for as many people as you’re comfortable hosting, typically 6-12 but it’s totally up to you.
- Some will be larger or smaller depending on the desire of the host. Some may include another Alliance to Cure Cavernous Malformation family as a co-host.
- Invite friends and family, if desired.
- Ability to connect to a live stream where the guests can watch a nationally broadcasted video stream (see below for options)
- Provide a festive atmosphere
- Some hosts will provide finger food, some will do a Bar-B-Q, some will provide a 5 course meal, some will do a potluck … it is up to you!
- Organize your event and provide some messages (that will be provided) on the Alliance to Cure Cavernous Malformation’s effort to Accelerate the Cure
- Complete a form letting us know the details of your event so we can set up a ticketing page and help advertise your event to the community.
When is the celebration?
Sunday, August 29th
What time is the celebration?
Approximately
- Eastern – the main program is around 4:45 pm, so a maximum of 3:30 – 6:00
- Central – the main program is around 3:45 pm, so a maximum of 2:30 – 5:00
- Mountain – the main program is around 2:45 pm, so a maximum of 1:30 – 4:00
- Pacific – the main program is around 1:45 pm, so a maximum of 12:30 – 3:00
Is this expected to be fancy or informal?
You get to choose, and each site/host will be different. Some will have a backyard party with drinks, some will have a more elaborate gala-like experience, some will gather around a TV screen with snack food.
What is the live stream / main program?
This is a national celebration and will include a large number of sites across the country. The Alliance to Cure Cavernous Malformation will broadcast a live stream during portions of the celebration that will include a welcome, main program featuring scientists and members, and thank yous.
What equipment do I need for the Live-Stream?
The live stream will be done through a YouTube link. It would be best if this can be shown on a TV screen so all the guests can see it. You can connect directly on a smartTV, use a FireTV stick, use an AppleTV from an iPhone or Mac, or hook a laptop to your TV with HDMI. We will give instructions on this in late July. Another option is multiple tablets that people can share. If there is no centralized option, guests could watch on their phones.
What would the agenda look like for the Celebration?
It again depends on what you would like to do. Here are two examples:
Informal party-like, less than 2 hours
Local gathering and hellos 20 mins
Virtual Welcome (streamed) 5 mins
Food and local messages 20 mins
Virtual main program (streamed) 20 mins
Accelerate the Cure (streamed) 15 mins
“Dessert” and interaction 20 mins
Virtual thank you and closer (streamed) 5 mins
End
Celebration Gala-like, less than 2.5 hours:
Local gathering and hellos 20 mins
Appetizer 10 mins
Virtual Welcome (streamed) 5 mins
Salad and local messages 20 mins
Dinner 20 mins
Virtual main program (streamed) 20 mins
Accelerate the Cure (streamed) 15 mins
“Dessert” and interaction 20 mins
Virtual thank you and closer (streamed) 5 mins
End
Is this a fundraiser?
Yes, it is both a celebration and a fundraiser to enable participants to help Accelerate the Cure. There will be opportunities during the live stream program for attendees to donate using their phones. This will be Alliance to Cure Cavernous Malformation’s primary fundraiser of the year.
How will donations work? What do I have to do?
We will have a smartphone app for donations to help accelerate the cure so that you do not have to worry about processing credit cards. For those guests that may want to write a donation check, we will provide you an envelope to send the checks to the Alliance to Cure Cavernous Malformation. Some hosts may want to do a local raffle or silent auction, but that will be up to you, there is no requirement.
How many other locations will there be?
This is a national event. We are excited about the possibility that yours will be one of at least 50-100 sites joining together to Celebrate Together for a Cure.
What will Alliance to Cure Cavernous Malformation provide?
Alliance to Cure Cavernous Malformation will provide programming, a centerpiece or banner, and assistance with ticketing and spreading the word.
How will people get invited to my event?
You can invite guests, and in addition, with your specific permission, if there are Alliance to Cure Cavernous Malformation members in your local area that want to go to an event in person, we will enable you to invite them or we can invite them on your behalf, with your permission. You will know who and how many to expect, and you can set a limit on the number of people you can host.
How will we get more information on exactly how the celebration day will work?
We will have more and more detailed information as we get closer to the event. In mid-August, we will have a zoom call for hosts that will provide the exact details of how to get to the YouTube link and messages. During the summer you will work with your main Alliance to Cure Cavernous Malformation contact on any other questions.
Updated 6.4.21
