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:
- Historical Site
- Amusement Park
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.