Acoustic Neuroma Association
Programs and results
What we aim to solve
Each year, more 3,000 individuals are diagnosed with an acoustic neuroma in the United States. Despite its occurrence, the rare brain tumor still remains relatively unknown to the general community. This leaves a significant population of patients seeking information related to treatment options and education from medical professionals, caregivers interested in learning how to navigate their role within a patient’s acoustic neuroma journey, and individuals needing a peer network that can guide a patient, caregiver, family, and friend through the emotional and physical impact an acoustic neuroma can have on one’s quality of life.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Patient and Caregiver Support
We publish NOTES, our quarterly newsletter with up-to-date information AN patients need;
Our Patient Information Packets are distributed free-of-charge to newly diagnosed and post-treatment patients. These packets include a series of Patient Information Booklets covering diagnosis, treatment options, eye issues, vestibular rehabilitation, facial issues, and headaches;
Our Peer Mentor Support Program provides patient-to-patient support for the newly diagnosed and those with ongoing concerns;
The ANA funds research and promotes ongoing patient participation in research through our medical center partners;
We manage an active series of Patient Support Groups in more than 50 cities, and we offer virtual support group options;
Our Webinar Series/Facebook Live Series is presented in partnership with leading acoustic neuroma medical professionals;
The ANA Website Discussion Forum allows individuals to connect with AN patients and caregivers from all over the world.
Education and Awareness
We offer:
a series of Patient Information Booklets covering diagnosis, treatment options, eye issues, vestibular rehabilitation, facial issues, and headaches;
NOTES, our quarterly newsletter with articles by medical professionals related to research, diagnosis, treatment, and management of acoustic neuroma symptoms and side effects;
a series of webinar events hosted by leading medical professionals covering a wide range of topics;
a Peer Network Program where patients engage with fellow patients for support;
a series of Patient Support Groups, available in-person and virtually, in 50 cities nationwide;
a Research Program dedicated to furthering all aspects of scientific knowledge related to acoustic neuromas, including its cause(s), development, and treatment, thus improving the lives of individuals living with AN, and finding its ultimate cure.
Research
The ANA is dedicated to furthering all aspects of scientific knowledge related to acoustic neuromas, including its cause(s), development, and treatment, thus improving the lives of individuals living with AN, and finding its ultimate cure.
We encourage investigators to submit grant proposals across the broad spectrum of acoustic neuroma. These areas may be original research drawn from disciplines such as audiology, biology, psychology, sociology, or pharmacology.
The ANA considers funding researchers and/or centers who have a formal affiliation with nonprofit, academic, medical, or research institutions. The principal investigator must have an appropriate level of background, training, and institutional engagement to support the proposed research.
Individual awards are typically up to $25,000 in a given year. Multi-year projects may be considered if they are consistent with our research initiative.
Where we work
External reviews
Our results
How does this organization measure their results? It's a hard question but an important one.
Number of support groups offered
This metric is no longer tracked.Totals By Year
Population(s) Served
People with diseases and illnesses
Related Program
Patient and Caregiver Support
Type of Metric
Output - describing our activities and reach
Direction of Success
Holding steady
Goals & Strategy
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?
The ANA is the premier resource for information, education, and support to all individuals impacted by acoustic neuromas. The vision of ANA is to continually improve the lives of Acoustic Neuroma patients and their families through communication, support, innovation, research, and partnerships with the medical community.
What are the organization's key strategies for making this happen?
ANA provides print, digital, and in-person programs that inform, educate and support individuals impacted by acoustic neuroma. Our programs focus on patient and caregiver education and support, collaboration with healthcare professionals who work with acoustic neuroma patients, awareness in the general community, and research to explore advancements in the field of acosutic neuroma.
What are the organization's capabilities for doing this?
ANA provides the following programs for helping to reach our goals:\n\nSupport Groups: formal, in-person support meetings led by trained AN peers\nANetwork: telephone support network led by trained AN peers\nCommunity Connections: informal, in-person support led by trained AN peers \nDiscussion Forum: online forum for AN patients to ask questions and learn from peers\nWebinars / FB Live: Patient and healthcare professional information and education sessions hosted online\nNewsletter: quarterly news source available in print and digital formats\nVideos: available in English, French, German, Spanish, and American Sign Language\nANAwareness Week: A week long awareness campaign implemented through digital, print, and in-person initiatives\nAN Volunteer Training and Resource Library\nPatient Booklets: Free booklets that cover diagnosis, brain anatomy, treatment, eye issues, vestibular rehabilitation, facial issues, headaches, or hearing\nPatient Registry: online database documenting patient experiences and used to inform research
What have they accomplished so far and what's next?
Added one additional support group in 2017\nAdded FB Live as a program offering\nImplemented Community Connections for one-on-one, in-person peer support\nIncreased Patient Registry participants\nIncreased Patient Events in 2018\nImproved social media follower count on Facebook, Twitter, Instagram, and LinkedIn
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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How is your organization using feedback from the people you serve?
To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals
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Which of the following feedback practices does your organization routinely carry out?
We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve, We tell the people who gave us feedback how we acted on their feedback
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What challenges does the organization face when collecting feedback?
We don't have any major challenges to collecting feedback
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
Acoustic Neuroma Association
Board of directorsas of 02/06/2024
Meredith Daly
Neil Donnenfield
Meredith Daly
Hela Kelsch
Cody Cooper
Kathy Hill
Samira Rajabi
Ronson Mahla
Tracy Schwimmer
Nancy Rhein
Greg Kingsley
Robin Batra
Robert Chernoff
David Kellogg
Mary Ann Mugel
Jay Magrisso
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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 ? Not applicable -
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
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
No data
Gender identity
No data
Transgender Identity
No data
Sexual orientation
No data
Disability
No data