THE XLH NETWORK INC

A worldwide patient support organization for people living and dealing with X-Linked Hypophosphatemia (XLH)

Albany, NY | www.xlhnetwork.org

GuideStar Charity Check

THE XLH NETWORK INC

EIN: 20-2441942

Contributions tax deductible
as of September 2024

IRS BMF 509(a)(1)
as of September 09, 2024

View summary

Charity Check report

Mission

The XLH Network, Inc.'s mission is to facilitate advocacy, education and research for XLH and related disorders by creating resources and a community for affected families, educating and supporting physicians and other providers of medical care, and fostering the search for a cure.

Ruling year info

2005

President, The XLH Network, Inc.

JoBeth Souza

Main address

911 Central Ave., #161

Albany, NY 12206-1304 USA

Show more contact info

EIN

20-2441942

Subject area info

Genetic conditions and birth defects

Musculoskeletal diseases

Population served info

Adults

Children and youth

People with disabilities

People with diseases and illnesses

Pregnant people

Show more populations served

NTEE code info

Nerve, Muscle and Bone Diseases (G50)

IRS subsection

501(c)(3) Public Charity

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Tax forms

Show Forms 990

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

We strive to provide resources and education for families living with X-Linked Hypophosphatemia and related disorders.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Advocacy

We participate in several local and national advocacy events annually for rare disease families.

Population(s) Served

People with diseases and illnesses

People with disabilities

Pregnant people

Caregivers

Families

Education

Our website offers education and resources for affected families.

Population(s) Served

Families

People with diseases and illnesses

Caregivers

XLH Day

XLH Day is an annual symposium that includes education, networking and social events for patients, families and physicians.

Population(s) Served

Adults

Young adults

Kids XLH Camp

Annual camp for affected children

Population(s) Served

Children and youth

Where we work

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

What is the organization aiming to accomplish?

Advocacy, education, connection.

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

What have they accomplished so far and what's next?

Financials

THE XLH NETWORK INC

Fiscal year: Jan 01 - Dec 31

Financial documents

Yes, financials were audited by an independent accountant.

Revenue vs. expenses: breakdown

SOURCE: IRS Form 990

NET GAIN/LOSS: in

Note: When component data are not available, the graph displays the total Revenue and/or Expense values.

Liquidity in 2022

SOURCE: IRS Form 990

36.18

Average of 10.62 over 7 years

Months of cash in 2022

SOURCE: IRS Form 990

21.4

Average of 14.7 over 7 years

Fringe rate in 2022

SOURCE: IRS Form 990

9%

Average of 6% over 7 years

Funding sources

Source: IRS Form 990

Assets & liabilities

Source: IRS Form 990

Financial data

SOURCE: IRS Form 990

Digitizing IRS form 990 data

THE XLH NETWORK INC

Revenue & expenses

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

Fiscal year ending: Download Data

Revenue
Contributions	$40,060
Program Services	$0
Investments	$0
Special Events	$0
Sales	$0
Other	$0
Total Revenue	$40,060

Expenses
Grants	$0
Salaries & Employee Benefits	$14,627
Professional Fees	$2,446
Occupancy	$0
Printing, Publications, Postage, etc.	$1,444
Other Expenses	$29,596
Total Expenses	$48,113
Net Gain/Loss	($8,053)

Revenue
Contributions	$141,772
Program Services	$0
Investments	$0
Special Events	$0
Sales	$0
Other	$0
Total Revenue	$141,772

Expenses
Grants	$0
Salaries & Employee Benefits	$48,358
Professional Fees	$2,385
Occupancy	$0
Printing, Publications, Postage, etc.	$1,669
Other Expenses	$51,223
Total Expenses	$103,635
Net Gain/Loss	$38,137

Revenue
Contributions	$71,644
Program Services	$67,151
Investments	$0
Special Events	$10,293
Sales	$0
Other	$0
Total Revenue	$149,088

Expenses
Grants	$0
Salaries & Employee Benefits	$52,079
Professional Fees	$0
Occupancy	$0
Printing, Publications, Postage, etc.	$2,538
Other Expenses	$90,826
Total Expenses	$145,443
Net Gain/Loss	$3,645

Revenue
Contributions	$75,897
Program Services	$41,945
Investments	$0
Special Events	$0
Sales	$0
Other	$0
Total Revenue	$117,842

Expenses
Grants	$0
Salaries & Employee Benefits	$42,164
Professional Fees	$127
Occupancy	$0
Printing, Publications, Postage, etc.	$8,991
Other Expenses	$61,456
Total Expenses	$112,738
Net Gain/Loss	$5,104

Revenue
Contributions	$137,594
Government Grants	$0
Program Services	$83,000
Investments	$0
Special Events	$0
Sales	$0
Other	$0
Total Revenue	$220,594

Expenses
Program Services	$55,590
Administration	$52,949
Fundraising	$3,000
Total Expenses	$111,539
Net Gain/Loss	$109,055

Functional expenses
Accounting Fees	$0
Advertising & Promotion	$0
Information Technology Expenses	$579
Insurance Expenses	$3,029
Interest Expenses	$0
Investment Management Fees	$0
Legal Fees	$0
Pension Plan Contributions	$0
Professional Fundraising Expenses	$0

Revenue
Contributions	$236,381
Government Grants	$0
Program Services	$13,750
Investments	$0
Special Events	$0
Sales	$0
Other	$981
Total Revenue	$251,112

Expenses
Program Services	$53,738
Administration	$43,212
Fundraising	$0
Total Expenses	$96,950
Net Gain/Loss	$154,162

Functional expenses
Accounting Fees	$10,000
Advertising & Promotion	$0
Information Technology Expenses	$652
Insurance Expenses	$1,187
Interest Expenses	$0
Investment Management Fees	$0
Legal Fees	$0
Pension Plan Contributions	$0
Professional Fundraising Expenses	$0

Revenue
Contributions	$190,569
Government Grants	$0
Program Services	$0
Investments	$0
Special Events	$0
Sales	$0
Other	$960
Total Revenue	$191,529

Expenses
Program Services	$158,203
Administration	$64,698
Fundraising	$0
Total Expenses	$222,901
Net Gain/Loss	($31,372)

Functional expenses
Accounting Fees	$11,100
Advertising & Promotion	$0
Information Technology Expenses	$2,607
Insurance Expenses	$1,399
Interest Expenses	$0
Investment Management Fees	$0
Legal Fees	$0
Pension Plan Contributions	$0
Professional Fundraising Expenses	$0

THE XLH NETWORK INC

Balance sheet

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.

Fiscal year ending: Download Data

Assets	Jan 01, 2016	Dec 31, 2016	Change
Contributions	$40,060
Cash & Equivalents	$116,215	$108,162	($8,053)
Fixed Assets (LBE - Depreciation)	$0	$0	$0
Other	$0	$0	$0
Total Assets	$116,215	$108,162	($8,053)

Liabilities	Jan 01, 2016	Dec 31, 2016	Change
Total Liabilities	$0	$0	$0

Fund balance	Jan 01, 2016	Dec 31, 2016	Change
Net Assets	$116,215	$108,162	($8,053)

Assets	Jan 01, 2017	Dec 31, 2017	Change
Contributions	$141,772
Cash & Equivalents	$108,162	$146,299	$38,137
Fixed Assets (LBE - Depreciation)	$0	$0	$0
Other	$0	$0	$0
Total Assets	$108,162	$146,299	$38,137

Liabilities	Jan 01, 2017	Dec 31, 2017	Change
Total Liabilities	$0	$0	$0

Fund balance	Jan 01, 2017	Dec 31, 2017	Change
Net Assets	$108,162	$146,299	$38,137

Assets	Jan 01, 2018	Dec 31, 2018	Change
Contributions	$71,644
Cash & Equivalents	$146,299	$149,944	$3,645
Fixed Assets (LBE - Depreciation)	$0	$0	$0
Other	$0	$0	$0
Total Assets	$146,299	$149,944	$3,645

Liabilities	Jan 01, 2018	Dec 31, 2018	Change
Total Liabilities	$0	$0	$0

Fund balance	Jan 01, 2018	Dec 31, 2018	Change
Net Assets	$146,299	$149,944	$3,645

Assets	Jan 01, 2019	Dec 31, 2019	Change
Contributions	$75,897
Cash & Equivalents	$149,944	$155,048	$5,104
Fixed Assets (LBE - Depreciation)	$0	$0	$0
Other	$0	$0	$0
Total Assets	$149,944	$155,048	$5,104

Liabilities	Jan 01, 2019	Dec 31, 2019	Change
Total Liabilities	$0	$0	$0

Fund balance	Jan 01, 2019	Dec 31, 2019	Change
Net Assets	$149,944	$155,048	$5,104

Assets	Jan 01, 2020	Dec 31, 2020	Change
Contributions	$137,594
Cash & Equivalents	$155,109	$264,164	$109,055
Accounts Receivable	$0	$0	$0
Pledges & Grants Receivable	$0	$0	$0
Receivable, Other	$0	$0	$0
Inventories for Sale or Use	$0	$0	$0
Investment, Securities	$0	$0	$0
Investment, Other	$0	$0	$0
Fixed Assets (LBE - Depreciation)	$0	$0	$0
Other	$0	$0	$0
Total Assets	$155,109	$264,164	$109,055

Liabilities	Jan 01, 2020	Dec 31, 2020	Change
Accounts Payable	$0	$0	$0
Grants Payable	$0	$0	$0
Deferred Revenue	$0	$0	$0
Loans and Notes	$0	$0	$0
Tax-Exempt Bond Liabilities	$0	$0	$0
Other	$0	$0	$0
Total Liabilities	$0	$0	$0

Fund balance	Jan 01, 2020	Dec 31, 2020	Change
Temporarily Restricted Net Assets	N/A	N/A	N/A
Permanently Restricted Net Assets	N/A	N/A	N/A
Total Restricted Net Assets	$23,519	$23,519	$0
Unrestricted Net Assets	$131,590	$240,645	$109,055
Net Assets	$155,109	$264,164	$109,055

Assets	Jan 01, 2021	Dec 31, 2021	Change
Contributions	$236,381
Cash & Equivalents	$264,164	$429,578	$165,414
Accounts Receivable	$0	$0	$0
Pledges & Grants Receivable	$0	$0	$0
Receivable, Other	$0	$0	$0
Inventories for Sale or Use	$0	$0	$0
Investment, Securities	$0	$0	$0
Investment, Other	$0	$0	$0
Fixed Assets (LBE - Depreciation)	$0	$0	$0
Other	$0	$0	$0
Total Assets	$264,164	$429,578	$165,414

Liabilities	Jan 01, 2021	Dec 31, 2021	Change
Accounts Payable	$0	$11,252	$11,252
Grants Payable	$0	$0	$0
Deferred Revenue	$0	$0	$0
Loans and Notes	$0	$0	$0
Tax-Exempt Bond Liabilities	$0	$0	$0
Other	$0	$0	$0
Total Liabilities	$0	$11,252	$11,252

Fund balance	Jan 01, 2021	Dec 31, 2021	Change
Temporarily Restricted Net Assets	N/A	N/A	N/A
Permanently Restricted Net Assets	N/A	N/A	N/A
Total Restricted Net Assets	$23,519	$23,519	$0
Unrestricted Net Assets	$240,645	$394,807	$154,162
Net Assets	$264,164	$418,326	$154,162

Assets	Jan 01, 2022	Dec 31, 2022	Change
Contributions	$190,569
Cash & Equivalents	$429,578	$397,954	($31,624)
Accounts Receivable	$0	$0	$0
Pledges & Grants Receivable	$0	$0	$0
Receivable, Other	$0	$0	$0
Inventories for Sale or Use	$0	$0	$0
Investment, Securities	$0	$0	$0
Investment, Other	$0	$0	$0
Fixed Assets (LBE - Depreciation)	$0	$0	$0
Other	$0	$0	$0
Total Assets	$429,578	$397,954	($31,624)

Liabilities	Jan 01, 2022	Dec 31, 2022	Change
Accounts Payable	$11,252	$11,000	($252)
Grants Payable	$0	$0	$0
Deferred Revenue	$0	$0	$0
Loans and Notes	$0	$0	$0
Tax-Exempt Bond Liabilities	$0	$0	$0
Other	$0	$0	$0
Total Liabilities	$11,252	$11,000	($252)

Fund balance	Jan 01, 2022	Dec 31, 2022	Change
Temporarily Restricted Net Assets	N/A	N/A	N/A
Permanently Restricted Net Assets	N/A	N/A	N/A
Total Restricted Net Assets	$23,519	$23,519	$0
Unrestricted Net Assets	$394,807	$363,435	($31,372)
Net Assets	$418,326	$386,954	($31,372)

THE XLH NETWORK INC

Financial trends analysis Glossary & formula definitions

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

This snapshot of THE XLH NETWORK INC’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.

Created in partnership with

Fiscal year: Jan 01 - Dec 31 View full report Download data

Business model indicators

Profitability	2020	2021	2022
Unrestricted surplus (deficit) before depreciation	$109,055	$154,162	-$31,372
As % of expenses	97.8%	159.0%	-14.1%
Unrestricted surplus (deficit) after depreciation	$109,055	$154,162	-$31,372
As % of expenses	97.8%	159.0%	-14.1%

Revenue composition
Total revenue (unrestricted & restricted)	$220,594	$251,112	$191,529
Total revenue, % change over prior year	0.0%	13.8%	-23.7%
Program services revenue	37.6%	5.5%	0.0%
Membership dues	0.0%	0.0%	0.0%
Investment income	0.0%	0.0%	0.0%
Government grants	0.0%	0.0%	0.0%
All other grants and contributions	62.4%	94.1%	99.5%
Other revenue	0.0%	0.4%	0.5%

Expense composition
Total expenses before depreciation	$111,539	$96,950	$222,901
Total expenses, % change over prior year	0.0%	-13.1%	129.9%
Personnel	46.9%	56.6%	27.1%
Professional fees	0.0%	10.3%	5.0%
Occupancy	0.0%	0.0%	0.0%
Interest	0.0%	0.0%	0.0%
Pass-through	0.0%	0.0%	0.0%
All other expenses	53.1%	33.1%	67.9%

Full cost components (estimated)	2020	2021	2022
Total expenses (after depreciation)	$111,539	$96,950	$222,901
One month of savings	$9,295	$8,079	$18,575
Debt principal payment	$0	$0	$0
Fixed asset additions	$0	$0	$0
Total full costs (estimated)	$120,834	$105,029	$241,476

Capital structure indicators

Liquidity	2020	2021	2022
Months of cash	28.4	53.2	21.4
Months of cash and investments	28.4	53.2	21.4
Months of estimated liquid unrestricted net assets	25.9	48.9	19.6

Balance sheet composition	2020	2021	2022
Cash	$264,164	$429,578	$397,954
Investments	$0	$0	$0
Receivables	$0	$0	$0
Gross land, buildings, equipment (LBE)	$0	$0	$0
Accumulated depreciation (as a % of LBE)	0.0%	0.0%	0.0%
Liabilities (as a % of assets)	0.0%	2.6%	2.8%
Unrestricted net assets	$240,645	$394,807	$363,435
Temporarily restricted net assets	N/A	N/A	N/A
Permanently restricted net assets	N/A	N/A	N/A
Total restricted net assets	$23,519	$23,519	$23,519
Total net assets	$264,164	$418,326	$386,954

Key data checks

Key data checks	2020	2021	2022
Material data errors	No	No	No

Operations

The people, governance practices, and partners that make the organization tick.

Documents

Letter of Determination

Form 1023/1024

President, The XLH Network, Inc.

JoBeth Souza

Number of employees

Source: IRS Form 990

THE XLH NETWORK INC

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

Compensation

Other

Show data for fiscal year

Compensation data

Download up to 5 most recent years of officer and director compensation data for this organization

There are no highest paid employees recorded for this organization.

THE XLH NETWORK INC

Board of directors
as of 09/28/2024

SOURCE: Self-reported by organization

Board of directors data

Download the most recent year of board of directors data for this organization

Board chair

JoBeth Souza

No affiliation

Elizabeth Olear

No affiliation

Shannon Sharp

Kelly Rushing

Marian Hart

Rebecca Fields

Aly Way

Jayla Klase

Christi Lindh

Organizational demographics

SOURCE: Self-reported; last updated 9/28/2024

Candid has made improvements to the race and ethnicity options.

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity

White/Caucasian/European

Race & ethnicity

Gender identity

No data

Transgender Identity

No data

Sexual orientation

No data

THE XLH NETWORK INC

A worldwide patient support organization for people living and dealing with X-Linked Hypophosphatemia (XLH)

Mission

Is this your nonprofit?

Programs and results

What we aim to solve

Our programs

Advocacy

Education

XLH Day

Kids XLH Camp

Where we work

Goals & Strategy

Charting impact

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

What have they accomplished so far and what's next?

Financials

Financial documents

Revenue vs. expenses: breakdown

Liquidity in 2022 info

36.18

Months of cash in 2022 info

21.4

Fringe rate in 2022 info

9%

Funding sources info

Assets & liabilities info

Financial data

Digitizing IRS form 990 data

THE XLH NETWORK INC

THE XLH NETWORK INC

THE XLH NETWORK INC

Business model indicators

Capital structure indicators

Key data checks

Operations

Documents

President, The XLH Network, Inc.

JoBeth Souza

Number of employees

THE XLH NETWORK INC

Compensation data

THE XLH NETWORK INC

Board of directors data

JoBeth Souza

Organizational demographics

Leadership

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

Liquidity in 2022

Months of cash in 2022

Fringe rate in 2022

Funding sources

Assets & liabilities