irs program accomplishments · form 990 part iii · fy2020
What they reported doing
- #1 primary $14KEach year the XLH Network conducts a weekend event throughout varying locations in the USA to bring together members with XLH, plus Doctors and Clinicians who deal with XLH. The purpose is to educate our members about the latest advances in medical treatment, physical therapy, clinical research, genetic testing, financial aid, and conveniences that will assist the patients with XLH to lead as much of a "normal" life as possible. For many attendees it is their first time meeting others who have the same disorder as they do. Due to the pandemic, the event was conducted virtually over 4 days during a weeks time.
- #2 $242To keep members brains and bodies active (as much as their physical limitations will allow) competing teams were formed to conduct a competition of an imaginary race from the East Coast of the USA to the West Coast and back. Mileage was achieved by doing numerous activities. Besides competing as to which team could amass the most mileage, the teams actively sought to get donations to XLH by having team sponsors make donations.
named programs · 2 · from sources
What they call their work
Annual XLH Education Event
Annual multi-day event held virtually or in various U.S. locations, bringing together individuals with XLH, doctors, and clinicians to share knowledge on medical treatments, physical therapy, genetic testing, and financial resources.
Virtual Mileage Competition
Engagement initiative where teams compete in an imaginary cross-country race by logging physical activity; includes fundraising component where sponsors donate to XLH Network.
activities · 2 groups
What they do
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Patient and Researcher Conferences 1 activity
- Host annual educational conference for XLH communityConducts an annual multi-day educational event for individuals with XLH, their families, and medical professionals, focusing on medical advances, therapy, research, and support services.
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Organized Running and Triathlon Events 1 activity
- Organize virtual team-based engagement and fundraising competitionOrganized a virtual team-based activity competition simulating a cross-country race, encouraging physical and mental engagement among members with XLH while raising donations through team sponsorships.
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financials · form 990 · fy2025
revenue
Total revenue$381K
Contributions & grants$369K97%
Program service revenue$11K3%
Investment income$00%
Other revenue$1K
expenses
Total expenses$404K
Program expenses77%
Admin / overhead11%
Fundraising12%
Salaries & benefits$74K
Grants paid out$0
Largest expense lineCompensation
balance sheet
Total assets$371K
Cash$368K
Investments$0
Liabilities$24K
Net assets$347K
Liquid reserves10.9 mo
5 years on record · 2020–2025 · YoY revenue +45.6%
leadership · form 990 part vii · fy2025
Who runs it
paid leadership · 1
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| SUSAN FAITOS | EXECUTIVE DIRECTOR | 30 | $68K |
board members · 11
- ALY WAY — DIRECTOR
- CHARLES POMEROY — DIRECTOR
- CHRISIT LINDH — DIRECTOR
- ELIZABETH OLEAR — DIRECTOR
- JOBETH SOUZA — PRESIDENT
- KELLY RUSHING — DIRECTOR TREASURER
- MARIAN HART — DIRECTOR
- REBECCA FIELDS — DIRECTOR
- SARAH DAS — TREASURER DIRECTOR
- SHANNON SHARP — VICE PRESIDENT
- SUNINDIYA BHALLA — DIRECTOR
relationships · 1
Who they work with
- Doctors and Clinicians who deal with XLH Partner — Medical professionals who participate in the XLH Network's educational events to provide clinical expertise and updates to patients and families.
strategies · 1
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.