FSHD Society meets the 20 Standards for Charity Accountability.
BBB WGA Comment
According to FSHD Society's 2020 audited financial statements:
"In April 2020, the Society discovered that it was a victim of an email phishing scam. $111,934 was transferred to a fraudulent bank account. Following an investigation by the Society's online bill payment service, the Society was able to recover $12,000, which resulted in a net loss of $99,934, which has been recorded as Other Loss in the accompanying Statement of Activities."
In finding that FSHD Society meets Standard 1, BBB Wise Giving Alliance considered the following: Management took several actions because of this fraud, including the implementation of additional controls over electronic bill payments and wire transfers as well as cybersecurity training and monitoring for the Society's staff. In addition to its cyber insurance, the Society has also purchased social engineering insurance which ensures against email phishing scams.
The FSHD Society seeks to accelerate research to expedite treatments and a cure for FSH Muscular Dystrophy (FSHD). The organization also aims to enlarge, engage, and empower an active global community. The FSHD Society's patient advocacy and education programs benefit patients and their families by connecting them to healthcare providers, research institutions, and support groups, providing educational materials, organizing educational meetings and conferences, creating opportunities and support for advocacy, and raising public awareness.
For the year ended December 31, 2020, FSHD Society's program expenses were:
Research |
$1,364,207 |
Patient advocacy and education |
$820,896 |
Total Program Expenses: |
$2,185,103 |
*2020 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.
Method(s) Used:
Direct mail appeals, Grant proposals, Internet, Invitations to fund raising events, Planned giving arrangements, Cause- related marketing (affinity credit cards, consumer product sales, etc.), Other
Note 1: According to FSHD's 2020 audited financial statements, the organization received in-kind contributions totaling $76,075 in the form of scientific committee expenses ($59,500), science time for FSHD Connect and patient education ($11,475), and investment advisory services ($5,100).
Note 2: In the financial section above, "other changes in net assets" refers to an other loss.
This organization is tax-exempt under section 501(c) (3) of the Internal Revenue Code.It is eligible to receive contributions deductible as charitable donations for federal income tax purposes.
The following information is based on FSHD Society's audited financial statements for the year ended December 31, 2020.
Source of Funds |
Gifts, grants, and contributions |
$1,748,962 |
Special events revenue, net |
$523,209 |
Investment return, net |
$399,879 |
Program revenue |
$158,395 |
Donated goods and services |
$76,075 |
Other income |
$527 |
Total Income |
$2,907,047 |
- Programs: 74%
- Fundraising: 14%
- Administrative: 12%
Total Income |
$2,907,047 |
Program expenses |
$2,185,103 |
Fundraising expenses |
$439,375 |
Administrative expenses |
$366,401 |
Other expenses |
$0 |
Total expenses: |
$2,990,879 |
Income in Excess of Expenses |
$-83,832 |
Beginning Net Assets |
$5,717,438 |
Other Changes In Net Assets |
$-99,934 |
Ending Net Assets |
$5,533,672 |
Total Liabilities |
$301,823 |
Total Assets |
$5,835,495 |