APRIL 7, 2020
Mike is the Managing Director of SRF.
At the end of the first quarter for 2020, we would like to share an update on SRF finances. Our mantra is Collaboration — Transparency — Urgency. We take transparency very seriously which is why we are sharing these numbers. We ask our families and friends to support SRF; as such, you deserve to know where the funds go and how they are used. You should expect this from any organization you support.
There are a few other reasons this is timely. First, we are about to expand the board and they need to understand where things sit as they become stewards of SRF on behalf of all US Syngap families. Second, we have an increasing number of donors who deserve to understand where SRF is deploying their funds. Third, Coronavirus. Not only has this a couple of things on hold that we needed to note — but it is also creating stress in the economy. We rely on generosity to fund our work, and now those in a position to give likely have less resources being met with more need. Finally, things have grown to a scale where an update is overdue!
SRF Financials as of 1Q20
Above there are three versions of the same table. The table has SRFs financials broken down as Donations or inflows, less all of our outflows — Grants, Program & Overhead — with the remaining Balance.
TABLE A: ACTUALS AS OF 31 MARCH 2020
This table is based on the SRF bank account. It shows that, since the creation of SRF, we have raised over $500,000, granted over $112,000, and spent $42,000 on programs and $32,000 on overheads leaving a balance of $350,000. This is an accurate statement of our bank balance but not an accurate picture of what we have done or available funds.
TABLE B. ADJUSTED FOR DIRECT GRANTS IN 2018 TO 3 GRANTEES ($365,000)
This table includes the first three payments SRF made for grants. There were donations made directly to institutions on behalf of SRF so they did not touch our bank account; as a result were not included in Table A. In Table B, we have increased the Donations (inflow) and Grants (outflow) rows in 2018 both by $365,000. As a result it shows that SRF has raised over $900,000 to date, will have granted over $476,000, spent $42,000 on programs and $32,000 on overheads. The remaining balance will be $350,000.
TABLE C. ADJUSTED FOR PENDING GRANTS IN 2020 TO 3 GRANTEES ($310,000)
Table C builds on B. It includes the three grant payments SRF currently plans to make in 2020. These are obligations that SRF has incurred but not paid yet. At the moment, with everything on hold for Coronavirus, we are waiting for the labs to return to work before we cut checks. There are too many unknowns at the moment. We have increased the Grants (outflow) row in 2020 by $310,000. As a result it shows that SRF has raised $900,000 to date, granted over $787,000, spent $42,000 on programs.
WHAT’S IN PROGRAM?
SRF has a number of programs including Research, Awareness and Education, as well as Family Support initiatives. SRF engages in conferences that are deemed appropriate in supporting the furtherance of our mission to directly support research and continue to increase awareness. Two notable conferences attended for these purposes in 2019 were the Global Genes Rare Patient Advocacy Summit held in September and the Syngap Roundtable held at the American Epilepsy Society Annual Meeting in December. SRF has promoted Family Support activities. For example, in 2019 we supported a Syngap Mom to attend a retreat with other Rare Disease Mom’s, serving the dual purpose of giving needed support to a well deserving parent and thinking about how we could offer a similar program for Syngap parents.
WHAT’S IN OVERHEAD?
As with most other organizations there are additional expenses to running a non-profit. SRF’s overhead consists primarily of legal fees and accountancy fees. The legal fees are for consultative services and filings, such as those that allowed us to apply for our 501c designation, various correspondence and contract review. Having a professional legal team to assist in these matters helps protect the Foundation, providing surety that our engagements are handled in a manner that is supportive of our mission. We leverage a formal accountancy service to review our yearly financials, file taxes, and provide general support ensuring that SRF records all transactions in line with generally accepted accounting principles (GAAP).
WHY WERE THERE NO RESEARCH GRANTS PAID IN 2019?
It looks odd to see a gap in grants in 2019. It may help to know that the grants made in 2018 were cut on 12/31/18. Also we were still working with grantees on how to secure follow-on payments. We require annual reports that we share with our SAB before releasing, the timing here resulted in these second payments falling in 2020.
I THOUGHT 100% OF DONATIONS TO SRF WENT TO GRANTS, SO WHY IS THERE OVERHEAD?
100% of donations do go to grants. SRF’s founders make dedicated donations to cover the very low (3.54% per table C) and unavoidable (legal, accounting) overheads incurred to run SRF.
WHY DID DONORS PAY 2018 GRANTS DIRECTLY?
In late 2018 SRF was eager to get work moving forward. SRF was a new legal entity and their 501(c)(3) tax status was not confirmed. The $365,000 was coming from two donors who preferred to give directly to entities with confirmed 501(c)(3) tax status, as a result these funds flowed to SRF grants but not through SRF’s accounts.