Brain Aneurysm Foundation Incorporated

Raising Awareness. Ending Fear.

aka BAF   |   Hanover, MA   |  www.bafound.org

Mission

To promote early detection of brain aneurysms by providing knowledge and raising awareness of the signs, symptoms and risk factors. Work with the medical communities to provide support networks for patients and families, as well as to further research that will improve patient outcomes and save lives.

Ruling year info

1995

Executive Director

Christine Buckley

Main address

269 Hanover St, Bldg 3

Hanover, MA 02339 USA

Show more contact info

EIN

04-3243864

NTEE code info

Neurology, Neuroscience (G96)

Brain Disorders (G48)

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

Every 18 minutes in the U.S, a weakened blood vessel in the brain (an aneurysm) ruptures, causing death in half its victims and often a lifetime of disabilities in survivors. Last year alone, an estimated 30,000 Americans, including children and young adults, suffered a ruptured aneurysm. Far more people have one or more aneurysms that may rupture at any moment. Patients lucky enough to survive are not the only victims of ruptured aneurysms; family members are often thrust into the demanding role of caregiver. The Brain Aneurysm Foundation was founded in 1994 by a Boston neurosurgeon and nurse practitioner to provide a resource for patients, caregivers, and health professionals who previously had nowhere else to turn. Since then, the foundation has expanded its mission to provide education and information, raise awareness, offer support to patients and caregivers, advocate to increase federal funding for brain aneurysm research, and provide direct support for brain aneurysm research.

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?

Research Grants

In 2018, he Brian Aneurysm Foundation awarded $500,000 in grants to 13 individuals conducting scientific research directed at early detection, improved treatment modalities, and technological advances that will ultimately improve outcomes for patients with brain aneurysms.

Population(s) Served
Adults

Developed new educational pamphlets for brain aneurysm treatment options and recovery to patients and healthcare facilities all over the world.

Population(s) Served
Adults

Developed a medical educational lecture to be presented at conferences, targeting primary care physicians and nurses, which is CME/CEU accredited. The lecture focused on the importance of early detection via proper diagnosis and screening, as well as treatment options for brain aneurysms.

Population(s) Served
Adults

Lobbied in Congress for the passage of House Resolution h.Res. 341 and increased support for brain aneurysm awareness, research, and early detection.

Population(s) Served
Adults

Where we work

Our results

SOURCE: Self-reported by organization

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

Number of unique website visitors

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

Adults

Type of Metric

Input - describing resources we use

Direction of Success

Holding steady

Number of return website visitors

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

Adults

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Number of new donors

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

Adults

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

The number of retained donors has grown as well as the giving level of new and retain on average has increased as well.

Number of grants and research funding awarded to the institution

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

Adults

Related Program

Research Grants

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

2019 was our largest total at $505,000 of 14 recipients. Each year we have given out more in research funding than the prior year. We are an entirely privately funded non-profit receiving no grants.

Total number of grants awarded

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

Adults

Related Program

Research Grants

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

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 Brain Aneurysm Foundation's mission is to significantly reduce the number of deaths and extent and severity of disabilities from brain aneurysms, as well as to reduce the burden on caregivers of survivors of ruptured brain aneurysms. Although this is a bold agenda, it is absolutely achievable.

Brain aneurysms are often a silent condition, but in many cases, the patient experiences symptoms that signal that a rupture is imminent or has already occurred. Patients who seek prompt medical attention and are treated by doctors knowledgeable about brain aneurysms can often be saved and sometimes spared a lifetime of serious neurological deficits.

But all too often, patients are not aware of the symptoms and ignore them and, surprisingly, many doctors are unaware of the symptoms. Our foundation is committed to raising awareness among laypeople and medical professionals alike about the early and advanced warning signs of brain aneurysms so that more lives can be saved and severe disabilities avoided.

We are also committed to increasing federal research of brain aneurysms, which pales in comparison to funding of conditions with similar prevalence and death rates. Research holds the key to the development of new and more effective ways of detecting and treating brain aneurysms, as well as to better understanding of what causes them to develop and/or rupture, which may lead to strategies to prevent them from occurring or rupturing.

Because not every brain aneurysm rupture can be prevented, we also strive to provide patients and caregivers with information and support, which is critical to improving their quality of life following such a catastrophic event. In addition, we consider the education and support of medical professionals, who rely on us for accurate and current information as well as for support in their efforts to educate and support their patients, as a critical part of our mission.

In summary, our mission is to use all means possible to reduce brain aneurysm deaths and disability and improve the lives of survivors and their caregivers.

The Brain Aneurysm Foundation employs a variety of strategies to help us achieve our mission. Each year, we review our previous year's activities and build on those that are the most effective, while also developing new, innovative ways to achieve our mission based on best practices.

Build Awareness
Events: We provide guidance, materials, and support to dozens of individuals who sponsor some 60-plus community-based events around the nation, from races to golf tournaments. These events, which often involve hundreds of people, help build awareness about brain aneurysms and also raise funds to support our mission. The people who organize and participate in these events are de facto ambassadors who help us build awareness at the grassroots level.

The foundation also organizes its own events, including an annual race/walk in Boston and, for the first time this year, a statewide event in Massachusetts to recognize Brain Aneurysm Awareness Month (September), a designation that we have championed and continue to champion at the state and federal level.

Social Media: We build awareness through an active presence on social media, which draws the attention of tens of thousands.

Engage Influencers: We designated our first national spokesperson (who volunteers his time), Boston Bruins defenseman Kevan Miller, which is helping us reach even more people throughout the nation. We also partner with influential community leaders who work with us to help us achieve our mission, such as a former government administrator with ties to the Massachusetts State House, the conductor of the Boston Pops, and others.

Advocate
For the past six years, we have led an increasingly large group to Washington, D.C., to participate in our annual Advocacy Day on Capitol Hill. Last year, we led our largest delegation to date — 125 people from 38 states — to raise awareness among legislators, advocate for the passage of a law (Ellie's Law) to increase federal funding for brain aneurysm research, and to improve insurance coverage for patients. We also advocate at the state and local level and organize events and activities aimed at influencing thought leaders in our communities. This work is assisted by our pro bono government affairs counsel.

Educate and Inform
A significant amount of resources are devoted at efforts to educate survivors, caregivers, medical professionals, and the public. This is achieved through multiple channels/formats, including our bi-annual newsletter, booklets for patients and survivors in multiple languages, website blogs, webinars, social media campaigns, and community symposia. We also run a daylong research symposium each year.

Support Research
The Brain Aneurysm Foundation is the largest single private funder of brain aneurysm research in the nation. To date, we have awarded more than $2.1 million in brain aneurysm research grants with funds raised from our supporters.

Our organization's greatest asset is our people: our Medical Advisory Board, Board of Directors, staff, and legions of supporters throughout the United States and Canada.

Our Medical Advisory Board comprises leading brain aneurysm experts (neurosurgeons, interventional neurologists, neuroradiologists, counselors, and others) from the nation's preeminent academic medical centers affiliated with top universities, including Harvard University, Johns Hopkins, the University of California, and many others .

This board has many important roles, including the development and review of educational materials for patients, caregivers, and healthcare professionals. The board also reviews and selects the most deserving, impactful research proposals for funding from our organization. The stature of our Medical Advisory Board provides our organization with the credibility to make our messages heard on Capitol Hill, at the state level, and among healthcare professionals and the public.

We also have an active and very engaged Board of Directors that includes business leaders, legislators, survivors, and caregivers, who bring not only their business acumen but also their personal perspectives to all aspects of the organization.

The foundation also has a deeply committed, albeit small, staff that includes an executive director, event coordinator, information technology professional, social media professional, and several administrative personnel. Each member of this team is devoted to the Brain Aneurysm Foundation's mission.

In addition, we have built relationships with numerous corporate and not-for-profit sponsors, who provide funding assistance as well as expertise. These sponsors include major companies like Medtronic and Stryker, as well as educational institutions such as the Mayo Clinic and Duke Health.

Last but hardly least, we have built a loyal following of thousands of committed supporters around the United States and Canada who, through events large and small and of all types, raise funds to support our mission as well as help raise awareness about brain aneurysms through the events themselves as well as social media and other channels. They are the foot soldiers without whom we could not achieve our mission.

Some major accomplishments/future goals:

• We are now the largest single private funder of brain aneurysm research in the nation. Last year alone, we distributed a record amount -- $445,000 -- in grants to 14 researchers at our annual Research Symposium. Funded entirely by donations, this was the largest amount ever awarded by the Brain Aneurysm Foundation, which thus far has provided more than $2.1 million in brain aneurysm research grants. We expect to raise even more in 2018.
• Advocating for and bringing us one step closer to the passage of Ellie's Law (HR 1648), which will provide $25 million in federal funding over five years for brain aneurysm research. We are now working to have Ellie's Law, named after Ellie Helton, who tragically died at age 14 of a brain aneurysm, introduced in the U.S. Senate.
• Establishing September as Brain Aneurysm Awareness (BAA) Month in many states across the nation, and advocating for a National Brain Aneurysm Awareness Month designation. After establishing the first BAA Day in Massachusetts this year, our goal is to hold Brain Aneurysm Awareness Days in all states in the coming years.
• Providing support and educational materials for some 60-plus fundraising events around the U.S. and Canada. These events brought in revenues of more than $580,400 in 2016 and raised awareness of brain aneurysms for thousands. We aim to increase these revenues each year.
• Engaging and garnering support from thousands of individual donors and corporations/organizations to provide us with the resources to fulfill our mission. In 2016, we raised more than $629,000 from these sources. Our goal is to raise even more from all sources in 2018.
• Creating and providing up-to-date, accurate information about brain aneurysms, treatment options, and recovery to patients and families, healthcare professionals, and the general public. This includes developing and maintaining a large online and print library of educational materials. We plan to continue to update/add to this resource in the coming years.
• Developing and updating our popular booklets, “Detection and Treatments" and “Treatment Recovery Guide," which are available in four languages.
• Developing and maintaining an online Resource Directory, which provides information about the resources that patients and families need, such as insurance, legal aid, and much more. We continually update this.
• Hosting an active online support community (bafsupport.org), and offering more than 60 support groups at healthcare facilities throughout the U.S. and Canada.
• Creating a DVD, “Life or Death: Early Detection of Brain Aneurysms," to educate emergency responders and other healthcare professionals.
• Maintaining an active presence on social media to educate the general public about brain aneurysms, with the goal of raising awareness of the symptoms and risk factors, and to help generate support for policies and funding that will benefit those affected by brain aneurysms.

Financials

Brain Aneurysm Foundation Incorporated
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Operations

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

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Brain Aneurysm Foundation Incorporated

Board of directors
as of 02/26/2021
SOURCE: Self-reported by organization
Board chair

John Rogers

RL Leaders and Captstone National Partners

Term: 2016 - 2020

Organizational demographics

SOURCE: Self-reported; last updated 12/3/2020

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
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

Transgender Identity

No data

Sexual orientation

No data

Disability

No data