Further Understanding the FAST & GeneTx Relationship
We have noticed a number of questions concerning how GeneTx is funded and specifically who pays for the salaries of the GeneTx employees. We understand your concerns and would like to clear things up.
In a nutshell, GeneTx is a separate company. While FAST owns a majority of GeneTx, the company has other investors as well. When GeneTx took on those investors, FAST and those other investors decided that GeneTx needed a paid executive team to run its operations. Put another way, the investors, who contributed millions of dollars to GeneTx, wanted a paid team to oversee GeneTx, and GeneTx used investor funding to pay those salaries.
In 2019, Ultragenyx paid GeneTx $20,000,000 for an option to buy GeneTx at a future date. In 2020, Ultragenyx paid GeneTx an additional $25,000,000 to extend the time period it had to purchase GeneTx. Those option fees, together with the earlier investments, have provided the vast majority of funding for GeneTx over the last two years, and have paid for the ongoing clinical trial and all salaries of GeneTx employees. Donations to FAST have not been used to pay for those salaries.
Finally, since FAST retains most of the ownership of GeneTx, we are required to disclose compensation to certain employees of GeneTx on our tax returns. This is specifically true where the GeneTx employee is a current or former member of the FAST board of directors, including Paula Evans, Allyson Berent, and Debbie Guagliardo. Those salaries, however, were not paid by FAST, nor were they funded by FAST donations.
We hope this helps everyone understand how GeneTx is funded. It's important that you all feel comfortable that your donations are put to good use. FAST takes our fiduciary responsibility incredibly seriously, as evidenced by our 4-star Charity Navigator rating, which is the highest possible rating and measures financial health, accountability and transparency.
A more detailed analysis of the relevant parts of our 2019 financials and federal tax return is below.
2019 – Below you will find a link to FAST (Foundation for Angelman Syndrome Therapeutics’) 2019 Audited Financial Statements as well as a link to the FAST 2019 Federal Tax Return. The FAST calendar year ended 2019 audited financials show total revenue of $4,336,872 and total expenses of $5,128,132. Additionally, there is $1,968,564 in non-operating gains recognized on FAST's investment in GeneTx Biotherapeutics, LLC. Expenses of $5,128,132 include research funding in the amount of $4,126,259 and $734,878 in other program-related expenses. Fundraising expenses totaled $183,057, and general administrative expenses incurred by FAST in 2019 were $83,938. $8,751,037 in net assets as well as $3,197,375 in grants payable were held at year-end, and they will be held until used for funding research towards a cure for Angelman syndrome and advancing the goals of FAST. Notably, all compensation shown on Part VII of the FAST 990 is related to reportable compensation from our related organization, GeneTX Biotherapeutics, and properly classified in Column E. For detailed information, please see FAST 2019 Audited Financials and FAST Federal Tax Return.
- About GeneTx (2/22/2018): https://cureangelman.org/about-genetx
- GeneTx Biotherapeutics receives FDA orphan-drug designation for Angelman syndrome treatment (3/28/2018): https://cureangelman.org/genetx-biotherapeutics-receives-fda-orphan-drug-designation-for-angelman-syndrome-treatment
- A message to the Angelman community from GeneTx Biotherapeutics (9/3/2019): https://cureangelman.org/a-message-to-the-angelman-community-from-genetx-biotherapeutics
- Frequently asked questions regarding the GeneTx KIK-AS Clinical Trial (1/15/2020): https://cureangelman.org/gtx102-faq