PLATINUM2024

The LAM Foundation

A Breath of Hope

aka LAM Foundation   |   Cincinnati, OH   |  https://www.thelamfoundation.org/

Mission

The LAM Foundation urgently seeks safe and effective treatments and ultimately a cure for lymphangioleiomyomatosis (LAM) through advocacy and the funding of promising research.  We are dedicated to serving the scientific, medical and patient communities by offering information, resources and a worldwide network of hope and support.

Ruling year info

1995

President, Board of Directors

Mr. Charles Wehland

Vice Chair, Board of Directors

Stephanie Dreyer

Main address

4520 Cooper Road Suite 300

Cincinnati, OH 45242 USA

Show more contact info

EIN

31-1438001

NTEE code info

Lung (G45)

Kidney (G44)

IRS filing requirement

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

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Lymphangioleiomyomatosis (LAM) is a rare lung disease that usually strikes women during the prime of their lives. This disease is characterized by an abnormal growth of smooth muscle cells, especially in the lungs, lymphatic system and kidneys. Unregulated growth of these cells can lead to loss of lung function, accumulation of lymph rich-fluid in the chest and abdomen and growth of tumors in the kidneys. LAM occurs almost exclusively in women. The estimated incidence is 3-5/million. More than 2,500 women with LAM have been identified to date but it is suspected that there may be as many as 250,000 undiagnosed or misdiagnosed patients living with LAM. Most women with LAM have symptoms for several years before being diagnosed. Though many women with LAM can extend their lives with treatment, there is no cure for this fatal disease.

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 Services

Patient Support is a very big part of the mission of The LAM Foundation. We offer several ways for patients to connect and share experiences with other women with LAM, both virtually and in-person. Our virtual series, LAMposium in Your Living Room, is an interactive educational webinar series featuring a broad range of topics presented by LAM experts. These sessions offer a remarkable opportunity to interact with clinicians, scientists, patients, and other members of our global LAM community. We also offer several publications to help those with LAM to stay up-to-date on the latest scientific, patient, and community events and accomplishments.

Population(s) Served
People with diseases and illnesses
Women and girls

Research funded by The LAM Foundation has dramatically advanced our understanding and treatment of this disease. Over the past 28 years, The LAM Foundation has raised nearly $34 million for research, advocacy, and patient support.
The LAM Foundation has committed nearly $12.75 million to LAM research, the majority of which has supported 151 peer-reviewed grants and translational projects. LAM Foundation-funded scientists reported several major discoveries, including evidence that LAM is genetic, the identification of a LAM gene, and a molecular explanation for abnormal smooth muscle cell growth in LAM. This data led to the identification of a therapy for LAM called sirolimus, or rapamycin, with clinical trial results published in the April 2011 issue of the New England Journal of Medicine (NEJM). Several additional molecular targets have been identified, many of which are addressable with drugs that are FDA-approved for other indications.

Population(s) Served
People with diseases and illnesses
Women and girls

Where we work

Affiliations & memberships

Better Business Bureau

National Organization for Rare Disorders - Member

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Amount of research funding provided

This metric is no longer tracked.
Totals By Year
Population(s) Served

Women and girls

Related Program

LAM Research Funding

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Funding has fluctuated because of the pandemic, and was supplemented by other organizations such as the NIH. The type and scope of research has also affected the research funding needed.

Number of training events conducted

This metric is no longer tracked.
Totals By Year
Related Program

Patient Services

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Virtual educational or social meetings.

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.

The ultimate goal of The LAM Foundation is to find a cure for LAM. To achieve our goal of finding a cure, we have focused on four primary objectives.

The LAM Foundation's primary objective is to fund research leading to improved knowledge on our path towards a cure.

Secondarily, we seek to educate LAM patients, caregivers, and healthcare providers.

Our third objective is to increase government advocacy for laws affecting LAM patients and funding for disease research.

Finally, the fourth objective is to foster a greater public understanding of LAM, as it is a rare and misunderstood disease.

Research: The types of research funding The LAM Foundation offers are: Career Development Awards to support research fellows; Established Investigator Awards for advanced research; and Pilot Project Awards for innovative research projects. In addition, The LAM Foundation considers proposals for special projects such as clinical trials and bridge funding.

Education: The LAM Foundation equips patients, caregivers, and physicians with expert information to improve the standard of LAM patient care. The LAM Foundation offers educational webinars covering a broad range of topics relevant to the LAM community.

Advocacy: The LAM Foundation advocates for LAM research funding from the NIH and Department of Defense. We also support legislation affecting LAM patients, such as the 21st Century Cures Act.

Awareness: We encourage and support grassroots efforts by those in the LAM community to raise awareness about this disease. Our website and publications provide accurate information for those affected by LAM, as well as family and friends who support them. June has been designated Worldwide LAM Awareness Month by the Worldwide LAM Patient Coalition (WLPC). We build awareness by telling patients' stories and encouraging those with LAM to educate and fundraise for The LAM Foundation.

Research: The Scientific Advisory Board works in conjunction with our Board of Directors and staff to identify research priorities and promising investigators.

Education: The LAM Foundation has educational materials available for patients, caregivers, and physicians. These include our website, webinars, social media, the LAM Liaisons program, patient and provider conferences, the patient handbook, the LAM Wikipedia page, and clinical treatment guidelines.

Advocacy: To facilitate these initiatives, we provide advocacy education, arrange virtual Capitol Hill days, and encourage LAM patients and their caregivers to meet with legislators locally.

Awareness: The LAM Foundation website has tools to facilitate online awareness campaigns, community-based fundraisers, and local human-interest stories. We work with a pro-bono public relations firm to promote The LAM Foundation activities and LAM research in the mainstream media and the medical community.

For the first 20 years of The LAM Foundation's history, there were no FDA approved treatments for LAM. Thanks to the work of The LAM Foundation, this number currently stands at one. However, this treatment is not a cure, and it does not work for all patients. The LAM Foundation seeks additional treatments for LAM, specifically including treatments aimed at reversing the course of the disease.

An increase in the patient population tells us that more physicians
are diagnosing LAM. In 2021-22, the number of newly diagnosed patients was higher than ever. In addition, the rate of lung transplants among LAM patients is decreasing, which tells us that patient care is improving.

Financials

The LAM Foundation
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Operations

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

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
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  • Compare nonprofit financials to similar organizations

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The LAM Foundation

Board of directors
as of 02/07/2024
SOURCE: Self-reported by organization
Board chair

Mr. Charles Wehland

Jones Day

Term: 2021 - 2024

Andy Romanosky

TCF Bank

Daniel Dilling, MD

Loyola Med Center

Vera Krymskaya, PhD

U Penn

Stephanie Nemser-Dreyer

Healthcare Mktg & Innovation

Eden Pontz

CHOP

Andrea Slattery

Symmetry Peak Mgmt

Charles Wehland

Jones Day

Lyndsay Hoy

Univ of Pennsylvania

Pat Venters

Univ of St Augustine

Christine Krueger

Eli Lilly

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? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • 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? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 2/7/2024

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
Heterosexual or Straight

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

No data

Disability

No data