Conference Support for Rare Neurodevelopmental Disorder Communities Participating in Simons Searchlight
SFARI is accepting applications for funding of Patient Advocacy Group Family Conferences, with a focus on groups in the Simons Searchlight community. This funding is intended to support and enhance the research component of conferences, from scientist presentations to in-person research opportunities for families. It is open to both patient advocacy groups (PAGs) with well-established conferences as well as those in early years of convening families and connecting to science. As they plan their conferences, we encourage PAGs to connect with the SFARI science team who may be able to facilitate connections to scientists with whom to explore possible conference involvement.
- Application Available
- Application Deadline
March 4, 2025 at 12:00 pm (noon) Eastern Time - Award Notification
April 2025 - Award Letters Sent
May–July 2025
- Application Available
- Application Deadline
March 4, 2025 at 12:00 pm (noon) Eastern Time - Award Notification
April 2025 - Award Letters Sent
May–July 2025
- Scientific Inquiries
[email protected] - Administrative Inquiries
[email protected] - Technical Support
[email protected] - Office Hours
Monday–Friday 9:00 a.m.–5:00 p.m. Eastern Time
- Application Available
- Application Deadline
March 4, 2025 at 12:00 pm (noon) Eastern Time - Award Notification
April 2025 - Award Letters Sent
May–July 2025
- Scientific Inquiries
[email protected] - Administrative Inquiries
[email protected] - Technical Support
[email protected] - Office Hours
Monday–Friday 9:00 a.m.–5:00 p.m. Eastern Time
SFARI Mission
SFARI’s mission is to improve the understanding, diagnosis and treatment of autism spectrum disorders by funding innovative research of the highest quality and relevance.
Opportunity
SFARI is accepting applications for funding of Patient Advocacy Group Family Conferences, with a focus on groups in the Simons Searchlight community. This funding is intended to support and enhance the research component of conferences, from scientist presentations to in-person research opportunities for families. It is open to both patient advocacy groups (PAGs) with well-established conferences as well as those in early years of convening families and connecting to science. As they plan their conferences, we encourage PAGs to connect with the SFARI science team who may be able to facilitate connections to scientists with whom to explore possible conference involvement.
Eligibility
Applicants should be patient advocacy groups (PAGs) for Simons Searchlight Gene/CNV groups who use Simons Searchlight as their major registry. Preference is given to those communities actively supporting Simons Searchlight recruitment and ongoing engagement within their communities. Conferences must be scheduled to occur between January 2025 and February 2026. Depending on the date of your conference, payments may be issued retroactively. We welcome applications for conferences held and/or organized by groups both in and outside the United States. Groups in the United States must have 501(c)(3) nonprofit status; international organizations will be required to be deemed the equivalent of a U.S. public charity via requested documentation or the completion of an equivalency determination.
Level and Duration of Funding
Funding will be provided in the form of a one-year gift. Only one gift can be issued per group per funding cycle (12 months) and should be used within that cycle. Failure to do so will make a group ineligible to apply for further PAG funding.
Funding is offered in three tiers as outlined below. Please note that we do not typically fund any conference in its entirety, and all applicants are strongly encouraged to seek multiple sources of funding support.
SFARI will request a descriptive post-meeting report that reflects the impact of this gift.
Funding levels per year, quoted in U.S. Dollars (USD), are:
Tier 1: $2,500
Tier 1 funding is intended for groups that are just getting started and plan to use the meeting to mobilize their community. Applicant groups are not required to have a full scientific meeting agenda in place at the time of application but are encouraged to plan for a scientific component to their in-person meeting.
This is also the funding tier for groups with significant research agendas but for which researchers will present remotely to the in-person conference.
Tier 2: up to $7,500
Tier 2 funding is intended for groups that plan for a significant scientific component to their meeting. This means the meeting will feature multiple scientists presenting relevant work, in person. Relationships with some, if not all, invited scientists should be established at the time of application. All invited scientists are required to supply letters of support confirming their intent to attend the meeting. The higher funding level is intended to facilitate travel costs/honorariums to attract in-person research presentations.
Tier 3: up to $15,000
Tier 3 funding is intended for groups planning a meeting with the most significant scientific component, featuring both in-person presentations by researchers as well as in-person participatory research for families. Relationships with all researchers invited to attend the meeting should be established at the time of application and letters of support confirming the scientists’ interest and ability to attend the meeting should be submitted with the application. Applications should include both the agenda for scientific presentations and the specific plans for in-person research. Searchlight blood draws are not counted toward the in-person research criterion, because costs are supported separately for this activity.
Please note that in the event of budgetary or other considerations, The Simons Foundation, Inc. reserves the right to refer an application to The Simons Foundation International, Ltd. (SFI) for consideration and funding, in which case SFI’s grant policies would apply.
Instructions for Submission
Prospective applicants must submit an application by Tuesday, March 4, 2025, at 12:00 p.m. (noon) Eastern Time. Applications must be submitted in Simons Award Manager (SAM). Please click on the ‘Funding Opportunities’ icon and navigate to the Simons Foundation Autism Research Initiative — Simons Searchlight Gift call. Click the ‘Create Application’ button to begin. Applications should be started and submitted under the applicant’s own account in SAM. Please refer to the How to Apply instructions and FAQ for further details. Informational videos on submitting applications in SAM can also be found here.
Application templates will be available in SAM beginning on Thursday, November 7, 2024. The following information/documents constitute the proposal:
- Applicant details, contacts and personnel fields.
- Proposal Narrative: The narrative should include the following information:
- The conference date (confirmed or anticipated)
- The conference location (city/state and venue name, if available)
- PAG/conference website(s), if available
- The conference organizing committee
- One paragraph describing the objective and structure of the conference as well as its previous and planned frequency. If applicable, please provide information on why the location of this conference will facilitate attendance by families and/or researchers.
- Please also include information on engagement of your group with the Simons Searchlight community (e.g., registry participation, biospecimen contributions, your efforts to engage the community in Simons Searchlight participation, whether you are planning on offering blood draws arranged for by Simons Searchlight). Information about engagement with Autism Brain Net (ABN), which is also supported by the Simons Foundation, is welcome.
- Anticipated number of families attending conference (can be a range)
- Anticipated number of affected individuals attending conference (can be a range)
- Number of meetings PAG has hosted previously, if applicable
- Attendance numbers from previous meetings, if applicable
- Number of meetings organized by your group that Simons Searchlight has attended previously, if applicable, and in what capacity (i.e., attendance? Attend and speak? Speak and blood draw?)
- In-person research description (for Tier 3 proposals). Please provide the names of the researcher(s) performing the research and briefly state the objectives, approach, power calculation and anticipated research study enrollment at the conference.
- Draft agenda for the upcoming meeting that is the subject of this application. The agenda should specify:
- Location and dates (note confirmed or anticipated)
- All talks (names of scientists) and activities (in person research and/or blood draws) planned (note confirmed or anticipated)
- Link to conference website, if available
- Conference agendas for the past: 1–2 meetings, if applicable
- Researcher letters of participation: Each proposed scientist should provide a separate letter confirming their commitment to participate in the conference. The letters should be on the investigator’s official institutional letterhead and describe, in a few sentences, what the scientist plans to speak about and how it is relevant for your gene group or what data they plan to collect for in-person research. Proposed scientific content or in-person research without a corresponding letter of participation will not be considered in application review.
- Biosketches for researchers: for applicants applying for Tier 3 funding.
- Budget: Applicants will be asked to provide 1) a budget for the funds requested from us and 2) an overall budget for the conference, including other sources of funding, both pending and confirmed. Please clearly specify the requested funding level for which you are applying and provide a budget justification.
Finalists selected for an award will be notified in April 2025.
Our Commitment to Diversity, Equity and Inclusion
Many of the greatest ideas and discoveries come from a diverse mix of minds, backgrounds and experiences. The Simons Foundation is committed to grantmaking that inspires and supports greater diversity and inclusiveness by cultivating a funding environment that ensures representation of all identities and differences and equitable access to information and resources for all applicants and grantees.
The Simons Foundation provides equal opportunities to all applicants for funding without regard to race, religion, color, age, sex, pregnancy, national origin, sexual orientation, gender identity, genetic disposition, neurodiversity, disability, veteran status or any other protected category under federal, state and local law. We also fund programs directed at supporting scientists from disadvantaged backgrounds or underrepresented groups, often working closely with professional societies and other funding agencies.
- Application Available
- Application Deadline
March 4, 2025 at 12:00 pm (noon) Eastern Time - Award Notification
April 2025 - Award Letters Sent
May–July 2025
- Scientific Inquiries
[email protected] - Administrative Inquiries
[email protected] - Technical Support
[email protected] - Office Hours
Monday–Friday 9:00 a.m.–5:00 p.m. Eastern Time
The deadline for application submission is Tuesday, March 4, 2025 at 12:00 p.m. (noon) Eastern Time.
Applications must be submitted via the Simons Award Manager (SAM). Please click on the Funding Opportunities icon and navigate to the Autism Research – Simons Searchlight Gift call. Click the Create Application button to begin. Applications should be started and submitted under the applicant’s own account in SAM.
Please note that anyone submitting an application will be added to the SFARI newsletter mailing list.
Informational Session for Potential Applicants
The SFARI science team will hold an informational Zoom meeting on December 11, 2024 at 1:00 p.m. Eastern Time. Interested applicants can register here.
Application Submission Instructions
To submit an application, the following sections must be completed in SAM:
- Proposal Tab:
- Applicant Details & Personal Data: Enter required fields. The applicant may edit information via the Edit Profile button as needed. If the applicant is a new user in SAM, their profile must be finalized before submission.
- Academic Degrees: Click the Add/Modify Degree(s) button to provide this information.
- Application Details: Provide the conference title, a start date on the first of the month during which the conference is estimated to take place, and an end date three months after the conference will take place, on the last day of the month. (For example, for a conference occurring on April 15, 2025, enter April 1, 2025 as the start date and July 31, 2025 as the end date). Hovering over the question mark icons will provide additional information on required fields.
- Proposal – The following information/upload must be provided:
- Proposal Narrative: Upload via the template provided, following the instructions on the template and in the RFA. The Proposal Narrative should be formatted with single-spacing, size 11 text, 0.5 margins. There is no page limit, but we anticipate Tier 1 and 2 applications likely will not need to exceed 2 pages and that Tier 3 proposals will not need more than an additional page or two to articulate the in-person research.
- Budget Tier: Check the box to indicate which tier of funding applies to your proposal:
- Tier 1: $2,500
- Tier 2: Up to $7,500
- Tier 3: Up to $15,000
Please see the RFA text for a description of each funding tier.
- Draft Agenda: Upload an agenda for the upcoming meeting that is the subject of this application. The agenda should specify:
- Location and dates (note confirmed or anticipated)
- All talks (names of scientists) and activities (in-person research and/or blood draws) planned (note confirmed or anticipated)
- Link to the conference website, if available
- Past Conference Agendas: Upload conference agendas for your past 1 to 2 meetings, if applicable.
- Researcher Letters of Participation: Each proposed scientist should provide a separate letter confirming their commitment to participate in the conference. The letters should be on the investigator’s official institutional letterhead and describe in a few sentences what the scientist plans to speak about and how it is relevant for your gene group, or what data they plan to collect for in person research. Proposed scientific content or in person research without a corresponding letter of participation will not be considered in application review.
- Biosketches: For applicants applying for Tier 3 funding, please include biosketches of the researchers who plan to participate. (Please leave this section blank if you are applying to Tier 1 or Tier 2 funding).
- Other (optional). If there is any other information you would like to provide, please include it here. We anticipate that most applicants will leave this section blank.
- Indicate the extent to which generative AI technology was used to develop your proposal.
- Data & Renewable Reagents: Indicate your plan for sharing data and renewable reagents (if applicable) by answering the provided questions.
- Contacts and Personnel Tab:
- Institution Administrative Contacts: At least one institution Signing Official and one Financial Officer must be added to the Institution Administrative Contacts section before you will be able to submit your application. Officials should hold a position in your Patient Advocacy Group (PAG) and have the authority to sign off on your PAG’s materials.
- Project Personnel: It is not anticipated that personnel salaries will be part of your request; therefore, you may leave this section blank. You will be able to add more details in the Budget Justification document in the next section.
- Budget Tab: Click the Edit/Modify button and add your total request from the Simons Foundation in the Non-Personnel Costs line, ensuring that it is not over the funding cap allowed for your tier. For example, if you are applying for Tier 1 funding, please enter $2,500 in the Non-Personnel Costs Line with a brief description (a few words). Please ensure that the “Period 1 Total Requested Budget Amount” line is equal to your total request.
- Budget Justification: Upload your budget justification using the template provided. The justification includes two sections:
- Section 1: Funding Requested from the Simons Foundation: Use the following categories and provide a description of the amount requested and justification for each budget category utilized:
- Supplies & Small Equipment
- Travel
- Other Expenses
- Total
- Section 2 Total Conference Funding: Describe the overall conference or meeting budget and, if applicable, other sources of funding for this event, including whether they are confirmed or pending. Please note that we do not typically fund any conference in its entirety and all applicants are strongly encouraged to seek multiple sources of funding support.
- Section 1: Funding Requested from the Simons Foundation: Use the following categories and provide a description of the amount requested and justification for each budget category utilized:
- Organization Assurances: Indicate if the conference activities require organizational assurances, including IRB approval. If so, click the “Add/Modify Assurances” button to add the assurance type, status, approval date, expiration date, and protocol number. There is a “pending” option for assurances that are in process, and to-be-determined dates can be left blank at this stage.
- Check Application Progress: Click the Check Application Progress button at the bottom of the screen to check for any missing required information or files. All missing required information will be listed at the top of the screen and must be corrected before the application can be submitted.
- Send for Sign-off: When the application is complete, click on the “Send for sign-off” button to send to your Signing Official for signature. The Signing Official added to the application will see the application in the “Applications to Review” section when they log in and will be responsible for signing and submitting the application to the Simons Foundation.
Confirmation of Submission: A confirmation page will appear on the Signing Official’s SAM page once the application is successfully submitted. Please note that you will not be able to submit an application if the deadline has passed.
- Application Available
- Application Deadline
March 4, 2025 at 12:00 pm (noon) Eastern Time - Award Notification
April 2025 - Award Letters Sent
May–July 2025
- Scientific Inquiries
[email protected] - Administrative Inquiries
[email protected] - Technical Support
[email protected] - Office Hours
Monday–Friday 9:00 a.m.–5:00 p.m. Eastern Time
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Eligibility and Timeline
Who is eligible to apply?
Patient advocacy groups (PAGs) planning a conference between January 2025 and February 2026 focusing on one of the genetic conditions under study by Simons Searchlight are eligible to apply.
What if a gene is not on the Simons Searchlight gene list, can we still apply?This grant mechanism is intended to support meetings organized around genes on the Simons Searchlight gene list and that either already do or intend to use Simons Searchlight as their primary registry.
What if a group is new and doesn’t know scientists to invite?Contact the SFARI science team at [email protected], and we’ll do our best to help facilitate connections, if possible.
Do blood draws or presentations from the Simons Searchlight team count toward the research agenda considered in application review?While we strongly encourage engagement with the Simons Searchlight team to plan your conference, blood draws and presentations from the Simons Searchlight team are already separately sponsored by SFARI and Simons Searchlight. These activities will not be considered toward additive research agendas evaluated for this award.
What is the timing of application, award notification and conference dates?The conference for which support is sought should happen between January 2025 and February 2026. Applications are due on March 4, 2025. Applicants will be notified of the funding decision in April 2025. Depending on the date of your conference, payments may be issued retroactively.
Can a group apply for funding of more than one meeting in one year?There is currently only one RFA scheduled for this year. Groups can apply to this RFA for the support of two meetings. However, it is unlikely that more than one meeting per genetic condition will be awarded funding.
What if a conference is being co-organized by two groups?You should submit a single, joint application, whether it’s two groups for the same genes or two different gene groups organizing a joint conference.
Do you accept revised proposals if the initial proposal isn’t funded?Not within the same year.
Do you have any resources to help me plan my conference?Yes. The Simons Searchlight team has collaborated with Global Genes to create a Conference Planning Toolkit, which can be found here.
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Personnel
Who should be listed as the PI?
Please list the individual judged by the applicant organization to have the appropriate level of authority and responsibility to direct the project or program supported by the grant. They are responsible and accountable to the applicant organization and the Simons Foundation for the proper conduct of the project or activity. They will act as the main point of contact for the foundation.
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Proposal
What is the page limit for the Proposal Narrative?
There is no page limit, but we anticipate Tier 1 and 2 applications likely will not need to exceed two pages and that Tier 3 proposals will not need more than an additional page or two to articulate the in-person research.
What should be included in the Proposal Narrative?Please see the RFA’s Instructions for Submission section and the template available in SAM for the proposal narrative instructions.
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Budget
What is the budget maximum? Are indirect costs included?
Please refer to the Level and Duration of Funding section of the RFA for the three tiers of funding being issued. Because these awards will be issued as gifts, indirect costs are not applicable.
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Submission
How is an application submitted?
Applications must be submitted via the Simons Award Manager (SAM). Please see the How to Apply section for more details. Applications should be started and submitted under the applicant’s own account in SAM.
Will I have to submit anything after the conference?We encourage gift recipients to upload a descriptive post-meeting report after the conference takes place. More details will be communicated with the award letter.
How do I create an account in SAM?If you are applying to the Simons Foundation for the first time, please register in SAM before selecting ‘Apply now.’ If you have a ProposalCentral (pC ) account, a profile was created for you in SAM using the email address associated with your pC account. Please select ‘Forgot Password?,’ set a new password for your SAM account and then select ’Apply now.’
Can I email or mail a proposal?No, the Simons Foundation only accepts applications submitted online through Simons Award Manager (SAM).
Can someone else (assistant, staff member, etc.) submit my application for me?Yes, adding a user to the Institution Administrative Contacts section of the application as an Institution Administrator will give them full access to edit an application and submit it for sign-off. To do so, the person who created the application would navigate to the contacts and personnel tab of the application. Under the Institution Administrative Contacts section, they would select the user and use the drop-down to indicate their role. If the user does not yet exist, click on the ‘create new institution official’ button, and add the newly created user as an Institutional Administrator.
Where is the ‘Submit’ button?The ‘Submit’ button is located at the bottom right of the screen. You will be unable to submit if you have not provided all the required information. If the submission deadline has NOT passed, use the ‘Check Application Progress’ button to check for missing requirements. If the problem persists, please contact [email protected]. If the deadline has passed, the submission period has closed, and you will not be able to submit.
I get an error message citing a missing section when I try to submit.The ‘Check Application Progress’ button reviews your application for missing sections. The submission instructions list the required sections and attachments. You must complete the missing sections listed. If you are still receiving error messages after completing and saving the indicated sections, please contact [email protected].
Are deadline times adjusted for time zones?No, please be advised that application deadlines on the application are in Eastern Time. We recommend registering early and submitting applications with ample time for corrections prior to the deadline hour. Site traffic can slow page-load times. The ‘Submit’ button will not work after the deadline time has passed.
Is there a confirmation email when I submit?A confirmation email is sent upon submission of the application. Make sure that spam filters allow emails from [email protected]. Additionally, the application will appear in the Submitted tab of the Applications in Progress table after submission.