LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC

aka LGDA | Saint Petersburg, FL | www.lgdalliance.org

GuideStar Charity Check

EIN: 26-1224181

Contributions tax deductible
as of March 2023

IRS BMF 509(a)(1)
as of March 13, 2023

View summary

Charity Check report

Mission

We connect patients and families to peers and networks of care, partner to advance new research, and educate the medical community to help all people navigating complex lymphatic anomalies have hope for a healthier tomorrow.

Ruling year info

2008

Executive Dirctor

Michael Kelly MD, PhD

Main address

7901 4th St. North

Saint Petersburg, FL 33702 USA

Show more contact info

EIN

26-1224181

Subject area info

Diseases and conditions

Population served info

People with disabilities

People with diseases and illnesses

NTEE code info

(Diseases, Disorders, Medical Disciplines N.E.C.) (G99)

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

This profile needs more info.

If it is your nonprofit, add a problem overview.

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?

:Patient Support Services

Supporting patients is at the root of everything we do. LGDA helps patients and their families navigate complex lymphatic anomalies (CLAs) by providing them with educational resources, support services and access to networks of peers and heath care professionals. We help the community obtain the medical, social, and emotional support they need with empathy and understanding.

LGDA’s three main objectives:

Identify patient resource needs through our registry, direct communication, and patient groups and forums. We aggregate available high-quality resources while identifying gaps and developing missing resources that are shared with the patient community.

LGDA connects the patient community to medical professionals, national and international.

LGDA fosters connections to peers and health care professionals that improve the social-emotional wellbeing of the patient community.

Population(s) Served

Chronically ill people

Terminally ill people

Patient Care Guidelines

LGDA is uniquely positioned to unite the scientific, medical, and patient communities to develop, pilot, and implement patient-centered norms for care. We expect this will increase awareness of CLA and best practices for diagnosis and treatment, and drastically improve the quality-of-care patients receive globally.
We will establish and international committee to oversee the guideline development and promotion process. Members will include medical experts, patients and representatives of key partner organizations and medical societies. Guidelines will be developed using current best evidence and multidisciplinary consensus to prioritize recommendations.

Once developed and approved the guidelines for care will be widely disseminated in the medical and patient communities. They will be translated into several languages to facilitate global dissemination. We will ensure our guidelines are widely accessible without subscription.

Promote Innovative Research

LGDA serves as the nexus between patient, scientific, medical, and industry networks. We identify innovative researchers and help them secure funding, publish their work, and share it with peers and the patient community. We ensure that the patient community has a voice in shaping patient-centered research outcomes. We foster collaboration between these groups to strengthen the broader CLA community’s understanding of current research.

We partner with our patients, key organizational partners and with our medical and scientific advisory committee, to identify gaps in research that should be targeted for further investigation and funding.
LGDA identifies and supports promising young researchers who are undertaking innovative research early in their careers to nurture their interest in CLA, and to create a pipeline of next generation researchers.

We create patient-friendly research summaries and ensure that research is accessible and clear to all audiences.

Population(s) Served

Chronically ill people

Terminally ill people

Chronically ill people

Terminally ill people

Where we work

External reviews

Financials

LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC

Fiscal year: Jul 01 - Jun 30

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 2020

SOURCE: IRS Form 990

57.05

Average of 14.26 over 4 years

Months of cash in 2020

SOURCE: IRS Form 990

48.1

Average of 12 over 4 years

Fringe rate in 2020

SOURCE: IRS Form 990

0%

Average of 0% over 4 years

Funding sources

Source: IRS Form 990

Assets & liabilities

Source: IRS Form 990

Financial data

Source: IRS Form 990

Digitizing IRS form 990 data

LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC

Revenue & expenses

Fiscal Year: Jul 01 - Jun 30

SOURCE: IRS Form 990

Fiscal year ending: Download Data

Revenue
Contributions	$105,826
Program Services	$0
Investments	$5,071
Special Events	$0
Sales	$0
Other	$0
Total Revenue	$110,897

Expenses
Grants	$44,723
Salaries & Employee Benefits	$0
Professional Fees	$2,251
Occupancy	$0
Printing, Publications, Postage, etc.	$4,474
Other Expenses	$64,907
Total Expenses	$116,355
Net Gain/Loss	($5,458)

Revenue
Contributions	$46,726
Program Services	$0
Investments	$7,928
Special Events	$0
Sales	$0
Other	$0
Total Revenue	$54,654

Expenses
Grants	$18,250
Salaries & Employee Benefits	$0
Professional Fees	$3,500
Occupancy	$0
Printing, Publications, Postage, etc.	$1,603
Other Expenses	$47,588
Total Expenses	$70,941
Net Gain/Loss	($16,287)

Revenue
Contributions	$117,135
Program Services	$0
Investments	$5,890
Special Events	$0
Sales	$0
Other	$0
Total Revenue	$123,025

Expenses
Grants	$0
Salaries & Employee Benefits	$0
Professional Fees	$1,875
Occupancy	$409
Printing, Publications, Postage, etc.	$5,501
Other Expenses	$123,881
Total Expenses	$131,666
Net Gain/Loss	($8,641)

Revenue
Contributions	$315,738
Government Grants	$0
Program Services	$0
Investments	$4,316
Special Events	$0
Sales	$0
Other	$0
Total Revenue	$320,054

Expenses
Program Services	$89,422
Administration	$16,485
Fundraising	$142
Total Expenses	$106,049
Net Gain/Loss	$214,005

Functional expenses
Accounting Fees	$1,500
Advertising & Promotion	$0
Information Technology Expenses	$0
Insurance Expenses	$1,908
Interest Expenses	$0
Investment Management Fees	$500
Legal Fees	$0
Pension Plan Contributions	$0
Professional Fundraising Expenses	$142

LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC

Balance sheet

Fiscal Year: Jul 01 - Jun 30

SOURCE: IRS Form 990

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	Jul 01, 2016	Jun 30, 2017	Change
Contributions	$105,826
Cash & Equivalents	$195,041	$206,472	$11,431
Fixed Assets (LBE - Depreciation)	$0	$0	$0
Other	$198,487	$167,909	($30,578)
Total Assets	$393,528	$374,381	($19,147)

Liabilities	Jul 01, 2016	Jun 30, 2017	Change
Total Liabilities	$25,102	$11,413	($13,689)

Fund balance	Jul 01, 2016	Jun 30, 2017	Change
Net Assets	$368,426	$362,968	($5,458)

Assets	Jul 01, 2017	Jun 30, 2018	Change
Contributions	$46,726
Cash & Equivalents	$206,472	$182,453	($24,019)
Fixed Assets (LBE - Depreciation)	$0	$0	$0
Other	$167,909	$175,312	$7,403
Total Assets	$374,381	$357,765	($16,616)

Liabilities	Jul 01, 2017	Jun 30, 2018	Change
Total Liabilities	$11,413	$11,084	($329)

Fund balance	Jul 01, 2017	Jun 30, 2018	Change
Net Assets	$362,968	$346,681	($16,287)

Assets	Jul 01, 2018	Jun 30, 2019	Change
Contributions	$117,135
Cash & Equivalents	$182,453	$162,228	($20,225)
Fixed Assets (LBE - Depreciation)	$0	$0	$0
Other	$175,312	$184,519	$9,207
Total Assets	$357,765	$346,747	($11,018)

Liabilities	Jul 01, 2018	Jun 30, 2019	Change
Total Liabilities	$11,084	$8,707	($2,377)

Fund balance	Jul 01, 2018	Jun 30, 2019	Change
Net Assets	$346,681	$338,040	($8,641)

Assets	Jul 01, 2019	Jun 30, 2020	Change
Contributions	$315,738
Cash & Equivalents	$160,453	$424,645	$264,192
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	$184,519	$128,268	($56,251)
Total Assets	$344,972	$552,913	$207,941

Liabilities	Jul 01, 2019	Jun 30, 2020	Change
Accounts Payable	$4,802	$0	($4,802)
Grants Payable	$0	$0	$0
Deferred Revenue	$0	$0	$0
Loans and Notes	$0	$0	$0
Tax-Exempt Bond Liabilities	$0	$0	$0
Other	$8,707	$7,444	($1,263)
Total Liabilities	$13,509	$7,444	($6,065)

Fund balance	Jul 01, 2019	Jun 30, 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	$0	$0	$0
Unrestricted Net Assets	$0	$0	$0
Net Assets	$331,463	$545,469	$214,006

LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC

Financial trends analysis Glossary & formula definitions

Fiscal Year: Jul 01 - Jun 30

SOURCE: IRS Form 990

This snapshot of LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE 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.

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Fiscal year: Jul 01 - Jun 30 View full report Download data

Business model indicators

Profitability	2020
Unrestricted surplus (deficit) before depreciation	$214,006
As % of expenses	201.8%
Unrestricted surplus (deficit) after depreciation	$214,006
As % of expenses	201.8%

Revenue composition
Total revenue (unrestricted & restricted)	$320,054
Total revenue, % change over prior year	0.0%
Program services revenue	0.0%
Membership dues	0.0%
Investment income	1.3%
Government grants	0.0%
All other grants and contributions	98.7%
Other revenue	0.0%

Expense composition
Total expenses before depreciation	$106,049
Total expenses, % change over prior year	0.0%
Personnel	0.0%
Professional fees	2.0%
Occupancy	0.0%
Interest	0.0%
Pass-through	10.7%
All other expenses	87.3%

Full cost components (estimated)	2020
Total expenses (after depreciation)	$106,049
One month of savings	$8,837
Debt principal payment	$0
Fixed asset additions	$0
Total full costs (estimated)	$114,886

Capital structure indicators

Liquidity	2020
Months of cash	48.1
Months of cash and investments	48.1
Months of estimated liquid unrestricted net assets	61.7

Balance sheet composition	2020
Cash	$424,645
Investments	$0
Receivables	$0
Gross land, buildings, equipment (LBE)	$0
Accumulated depreciation (as a % of LBE)	0.0%
Liabilities (as a % of assets)	1.3%
Unrestricted net assets	$0
Temporarily restricted net assets	N/A
Permanently restricted net assets	N/A
Total restricted net assets	$0
Total net assets	$545,469

Key data checks

Key data checks	2020
Material data errors	No

Operations

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

Documents

Letter of Determination is not available for this organization

Form 1023/1024 is not available for this organization

Executive Dirctor

Michael Kelly MD, PhD

LinkedIn profile

Dr. Michael Kelly became LGDA’s Executive Director in 2021. He brings years of experience as a director of clinical and research programs focused on pediatric and young adult patients with rare diseases, including complex lymphatic anomalies (CLA). Dr. Kelly joined LGDA in June of 2020 as the Chief Medical Officer to strengthen national and international collaborations that promoted our understanding of CLAs with the goal of providing more effective and safer therapies for children and adults. Dr. Kelly attended the University of Cincinnati in 1980-1985, staying on to finish his MD, PhD in 1993. Dr. Kelly then completed his Pediatric residency and Hematology/Oncology fellowship at Washington University in St. Louis in 1998. He was the Pediatric Cancer Program Director at the Medical College of Wisconsin, Children’s Hospital of Wisconsin and most recently the Chief Research Officer at Akron Children’s Hospital.

Number of employees

Source: IRS Form 990

LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE 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.

LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC

Board of directors
as of 03/06/2023

SOURCE: Self-reported by organization

Board of directors data

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

Board chair

Scot Wiesner

Tiffany Ferry

LMI Institute

Scott Goldfarb

Mitch Maersch

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? No
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? No
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? No
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 2/27/2023

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

Gender identity

Male, Not transgender (cisgender)

Sexual orientation

Decline to state

Disability status

Decline to state

Race & ethnicity

No data

Gender identity

No data

Sexual orientation

No data

Disability

No data

LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC

Mission

Is this your nonprofit?

Programs and results

What we aim to solve

This profile needs more info.

Our programs

:Patient Support Services

Patient Care Guidelines

Promote Innovative Research

Where we work

Financials

Revenue vs. expenses: breakdown

Liquidity in 2020 info

57.05

Months of cash in 2020 info

48.1

Fringe rate in 2020 info

0%

Funding sources info

Assets & liabilities info

Financial data

Digitizing IRS form 990 data

LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC

LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC

LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC

Business model indicators

Capital structure indicators

Key data checks

Operations

Documents

Executive Dirctor

Michael Kelly MD, PhD

Number of employees

LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC

Compensation data

LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC

Board of directors data

Scot Wiesner

Board leadership practices

Board orientation and education

CEO oversight

Ethics and transparency

Board composition

Board performance

Organizational demographics

Leadership

Race & ethnicity

Gender identity

Sexual orientation

Disability

Liquidity in 2020

Months of cash in 2020

Fringe rate in 2020

Funding sources

Assets & liabilities