In-Person Family Meetings

What to consider when planning an in-person meeting:

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Meeting Agenda

What can Simons Searchlight offer?

Presentations from Simons Searchlight Experts: 

Question Forum for Families:

Families in attendance have the opportunity to present questions to our expert panel and also interact with other families in an open forum.

Research Involvement from Simons Searchlight:

Families may request research activities from Simons Searchlight at the meeting. Depending on what resources are available and the number of families in attendance, some possible options for research are:

  • General information booth where Simons Searchlight team members aid families with completing registration and answer any questions about the study.
  • Collection of saliva or blood research samples from registered and consented families, coordinated by the Simons Searchlight team. This requires 2 to 3 months of pre-planning and scheduling.
  • One-on-one evaluations with a medical professional for children who have the genetic change and their parents. This may be with a Simons Searchlight doctor, genetic counselor, or other clinician (~45-60 minutes per evaluation).
  • One-on-one “Ask the Expert” sessions for parents. Unlike the evaluations, these sessions will be just for parents to ask questions about their children (~20 minutes per session).
  • Sessions with Simons Searchlight-affiliated researchers. Simons Searchlight has many collaborating researchers that may be interested in collecting data at the family meeting.
  • Sessions with external researchers. If applicable for your family group, Simons Searchlight can collaborate with outside researchers to collect data for their studies during the family meeting.

Discussion on Establishing a Nonprofit Foundation (If Applicable): 

If a family group is interested in applying for nonprofit status for their foundation, they may request a session with the Simons Searchlight team for helpful tips on what this process entails.

What can families organize for the meeting?

Any other activities during the family meeting will be organized by families. Here are some ideas from past meetings:

Resource Fair (during the meeting): 

Families may invite various external groups to provide different resources to attendees. Some examples of previous groups at family meetings are:

  • Applicable non-profit organizations
  • Companies that provide specialty products for children with behavioral or medical concerns
  • Attendees that provide services or activities for families, examples: hair cuts for children with sensory issues, craft stations, etc.

Family Outing (for a free day before the meeting begins or after it wraps up): 

Explore the attractions at the meeting location by organizing a day trip for families. Check out the local:

  • Museum
  • Historical Site
  • Zoo
  • Aquarium
  • Amusement Park

TIP:

Remember to factor in location and travel arrangements when planning a day trip!

Families can also opt to organize a dinner for attendees instead of coordinating an outing.

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Event Outreach

Families play a large role in organizing in-person family meetings.  

It is important that the Simons Searchlight team has an accurate count of how many people will be attending the meeting to know what resources will be needed for research activities. It is also beneficial for family group organizers to know the expected attendance for meeting bookings, events, catering,and other meeting logistics.

Here are some helpful outreach and organizing tips: 

  1. Create a Facebook Group to coordinate with other members eager to help with event planning. This is a great way to delegate tasks and keep any meeting discussions in a localized place.

  2. Once a venue and date are finalized, create a Facebook Event to help keep track of attendance. Set deadlines for people to register for the meeting.

  3. Develop a survey or registration portal for the event. Some good options for this are SurveyMonkey.com and Google Forms. Post the survey link in the Facebook Event and in any other social media accounts your family group manages.

  4. Keep track of confirmed attendees in an excel file or a google doc. If research activities are requested, Simons Searchlight will need to know all family members that will be attending and if they are participating in research. Periodically update Simons Searchlight with new confirmed attendees.

  5. Utilize partner organizations to spread the word. Newsletters and webpages can be a great place to advertise the event. Once the date and venue are finalized, Simons Searchlight will post the meeting details in our newsletter.

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Preparation for Meeting and Deadlines

In-Person Meeting Timeline:

A least 6 months of planning is needed from the time families contact Simons Searchlight and the day of the meeting.

6 Months Before:

  • Family group contacts Simons Searchlight by submitting the online application form.
  • Family group establishes a date for the family meeting, which is confirmed by the Simons Searchlight team.

5 Months Before:

  • Family group finalizes a location and venue for the meeting and begins the booking process.
  • Family group finalizes the level of Simons Searchlight research involvement they are interested in for the meeting.
  • Family group contacts members that are not registered with Simons Searchlight to begin registration process before deadline.

4 Months Before:

  • Family group provides Simons Searchlight with a list of confirmed meetings attendees.

  • Simons Searchlight sends first reminder email to families to complete the following tasks:
    • Create account and complete consent forms for participating family members.
    • Upload a copy of your or your child’s genetic testing lab report to your online profile.
    • Complete medical history phone call with genetic counselor.
    • Finish any research surveys assigned to online profiles.
  • Family group decides if they want Simons Searchlight to present at their family meeting and decides on a topic.

3 Months Before:

  • Simons Searchlight sends a second reminder email to families to complete registration and consent.
  • Confirmation of speakers that will be attending the meeting.

2 Months Before:

  • DEADLINE for registrations to SimonsSearchlight.org for families that want to provide their family information to be included in the meeting presentation.
    • Consent forms must be completed.
    • Lab reports must be submitted by this deadline.
    • Complete any assigned research surveys and schedule medical history call by this time.
  • Simons Searchlight reaches out to families to confirm any research sample collection needs for scheduling purposes (if applicable).

1 Month Before:

  • Family group sends Simons Searchlight a finalized list of meeting attendees.

  • Simons Searchlight finalizes any scheduling of research activities (if applicable).

0-2 Weeks Before:

  • Simons Searchlight team prepares for the event by analyzing data, creating presentations, and finalizing the agenda.
  • Family group finalizes any agenda items they have organized.

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Meeting Logistics

Helpful tips for planning the meeting!

Choosing a venue:

Family meetings are often held at hotels because of the range of agenda activities and necessary meeting locations. Space is usually reserved for the following activities:

  • Conference room for presentations.
  • Hospitality room for meeting down time.
  • Dining room/ballroom for meals arranged with hotel catering (if requested).
  • Rooms for research sessions – small conference rooms or hotel rooms.
  • Booths or tables for meeting registration and/or resource fair.

Choosing a hotel or conference center as a meeting venue also provides lodging for families that are traveling to the meeting location.

TIP:

Hotels at or near airports help keep transportation needs limited.

Structuring the agenda:

It is easy to over-schedule the meeting so it’s good to factor relaxation time into the agenda. Free time can be spent connecting with other families and building your community.

  • Your group may find it beneficial to reserve time for discussing the next steps including fundraising, advocacy, arranging for future meetings, and setting up an advisory board.

Presentations:

Any presentations at the meeting will require audio/visual equipment, including: projector(s), microphones, video-taping or photography equipment, etc.

  • Depending on where your group is having the meeting, the venue may offer equipment rentals or other services.

TIP:
Bringing your own AV equipment or renting from a company other than the event venue may save some money in the budget.

Childcare:

If attendees plan to bring their children to the meeting, your family group may need to factor in providing childcare during the event.

  • Parents may want to attend some presentations that may be less suited for children (research summaries, “ask an expert” sessions).

TIP:
There a reputable, national agencies that your group may want to contract with for the meeting.
Example: Corporate Kids Events, Inc.

Follow the link below to submit an application for Simons Searchlight family meeting assistance:

Complete your application here!