GOLD2023

LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC

aka LGDA   |   Saint Petersburg, FL   |  www.lgdalliance.org
GuideStar Charity Check

LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC

EIN: 26-1224181


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

Communication

Programs and results

What we aim to solve

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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

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.

Population(s) Served

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

Financials

LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC
Fiscal year: Jul 01 - Jun 30

Revenue vs. expenses:  breakdown

SOURCE: IRS Form 990 info
NET GAIN/LOSS:    in 
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.

Liquidity in 2023 info

SOURCE: IRS Form 990

Average of 326.08 over 7 years

Months of cash in 2023 info

SOURCE: IRS Form 990

Average of 13.7 over 7 years

Fringe rate in 2023 info

SOURCE: IRS Form 990

%

Average of 0% over 7 years

Funding sources info

Source: IRS Form 990

Assets & liabilities info

Source: IRS Form 990

Financial data

SOURCE: IRS Form 990

LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC

Revenue & expenses

Fiscal Year: Jul 01 - Jun 30

SOURCE: IRS Form 990 info

Fiscal year ending: cloud_download Download Data

LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC

Balance sheet

Fiscal Year: Jul 01 - Jun 30

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: cloud_download Download Data

LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC

Financial trends analysis Glossary & formula definitions

Fiscal Year: Jul 01 - Jun 30

SOURCE: IRS Form 990 info

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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Business model indicators

Profitability info 2020 2021 2022
Unrestricted surplus (deficit) before depreciation $214,006 $111,618 -$78,207
As % of expenses 201.8% 52.8% -24.5%
Unrestricted surplus (deficit) after depreciation $214,006 $111,618 -$78,207
As % of expenses 201.8% 52.8% -24.5%
Revenue composition info
Total revenue (unrestricted & restricted) $320,054 $323,008 $321,718
Total revenue, % change over prior year 0.0% 0.9% -0.4%
Program services revenue 0.0% 0.0% 0.0%
Membership dues 0.0% 0.0% 0.0%
Investment income 1.3% 0.5% 0.3%
Government grants 0.0% 0.0% 0.0%
All other grants and contributions 98.7% 99.5% 99.7%
Other revenue 0.0% 0.0% 0.0%
Expense composition info
Total expenses before depreciation $106,049 $211,390 $319,777
Total expenses, % change over prior year 0.0% 99.3% 51.3%
Personnel 0.0% 0.0% 17.6%
Professional fees 2.0% 1.5% 69.5%
Occupancy 0.0% 0.0% 0.0%
Interest 0.0% 0.0% 0.0%
Pass-through 10.7% 17.5% 8.3%
All other expenses 87.3% 81.0% 4.5%
Full cost components (estimated) info 2020 2021 2022
Total expenses (after depreciation) $106,049 $211,390 $319,777
One month of savings $8,837 $17,616 $26,648
Debt principal payment $0 $0 $0
Fixed asset additions $0 $0 $0
Total full costs (estimated) $114,886 $229,006 $346,425

Capital structure indicators

Liquidity info 2020 2021 2022
Months of cash 48.1 30.2 17.7
Months of cash and investments 48.1 30.2 21.7
Months of estimated liquid unrestricted net assets 61.7 37.3 21.7
Balance sheet composition info 2020 2021 2022
Cash $424,645 $532,740 $471,896
Investments $0 $0 $107,246
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) 1.3% 0.8% 0.0%
Unrestricted net assets $0 $0 $578,870
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
Total net assets $545,469 $657,077 $578,870

Key data checks

Key data checks info 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 is not available for this organization
Form 1023/1024 is not available for this organization

Executive Dirctor

Michael Kelly MD, PhD

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
Related
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Compensation data
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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

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
Sexual orientation
Decline to state
Disability status
Decline to state

Race & ethnicity

No data

Gender identity

No data

Transgender Identity

No data

Sexual orientation

No data

Disability

No data