DANNY DID FOUNDATION

Protecting Kids with Epilepsy.

aka Danny Did   |   Evanston, IL   |  www.dannydid.org

Mission

Founded by Chicago parents Mike and Mariann Stanton in January 2010 after the sudden death of their four-year-old son Danny, the Danny Did Foundation's primary mission is to prevent deaths caused by seizures. The Foundation is dedicated to advancing public awareness of Sudden Unexpected Death in Epilepsy (SUDEP), enhancing the SUDEP communication model between medical professionals and families impacted by seizures, and gaining mainstream acceptance and use of seizure detection and prediction devices that may assist in preventing seizure-related deaths. The name of the Danny Did Foundation originates from the last line of Danny Stanton's obituary, written by his dad: “Please go and enjoy your life. Danny did."

Ruling year info

2010

Executive Director

Mr. Tom Stanton

Assistant Executive Director

Mrs. Mary Duffy

Main address

3008 Central Ave. Suite 203

Evanston, IL 60201 USA

Show more contact info

EIN

27-1642251

NTEE code info

Epilepsy (G54)

Alliance/Advocacy Organizations (B01)

Single Organization Support (W11)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Epilepsy affects nearly 3.5 million people in the United States and 65 million people worldwide. One in 26 Americans will develop epilepsy during their lifetime. Seizures can be fatal – more people die as a result of seizures than from fires and sudden infant death syndrome (SIDS) combined – and thousands of deaths occur annually from SUDEP, status epilepticus (prolonged seizures) and other seizure-related causes such as drowning and other accidents. SUDEP is described by the National Institutes of Health as the most common epilepsy-related cause of death. The Foundation works to advance public awareness of epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP), strives to improve communication about SUDEP between medical professionals and families impacted by seizures, and advocates for the mainstream acceptance and use of seizure detection and prediction devices that may assist in preventing seizure-related deaths. Ultimately, our goal is to prevent deaths caused by seizures.

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?

Epilepsy and SUDEP Public Awareness

Seizure Safety and SUDEP Awareness:
 
To advance awareness of Sudden Unexplained Death in Epilepsy among both patients and doctors, we have create and execute public awareness campaigns aimed at increasing understanding for epilepsy. We have also developed, printed and distributed nearly 40,000 Seizure Safety and SUDEP Information brochures to schools, pediatrician's offices, neurologists offices, hospitals, epilepsy centers, and epilepsy organizations. With this brochure - available in both English and Spanish - more people will be better informed about the condition of epilepsy, and the full range of outcomes associated with the effects of seizures, and thus will be better informed to maker smarter decisions on how they care for themselves and their loved ones.

Population(s) Served
Families
Adults

We have supported clinical trials for various seizure detection monitors at hospitals across the United States. These trials are groundbreaking in that devices of this type has never before been tested in the U.S. within a collaborative setting organized by major epilepsy centers. Our intention is to support and grow these trials with other seizure detection and prevention devices. These trials are critical because they provide medical professionals with the data required to make an educated, scientific recommendation to their patients as to whether a device can be both safe and useful for them.

Population(s) Served
Adults

To make seizure monitoring devices available to those who cannot afford them, the Danny Did Foundation provides grants to individuals and families in need, so that they can purchase these resources. On average, the devices retails for approximately $700.

Our purpose with this program is make a practical, near-term impact. Having a monitoring device in place can increase the short term safety for the person who is being monitored, and to increase the peace of mind for the caregiver.

Population(s) Served
Adults

This program engages kids and young adults into the conversation regarding epilepsy and SUDEP through the medium of sports, one of Danny's great passions. Our goal is to introduce ourselves to the next generation of doctors, nurses, researchers, legislators and policy makers to our cause in a way they find fun and enjoyable. We do this through a series of athletic events - a kickball tournament, basketball clinics, hockey games - and by speaking to students at grade schools, high schools and colleges. Over time, as these youth become adults, they will come to view our foundation in a more focused and contributory way.

We also work to make educational events accessible to parents and patients, so that they can learn about resources that can help them to better treat their loved one. We provide grants to enable parents to attend the Partners Against Mortality in Epilepsy (PAME) conference, and the Epilepsy Awareness Day Expo at Disneyland. Each of these events have become premier settings for learning and networking for caregivers in the epilepsy community.

Population(s) Served
Adults

Where we work

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 Foundation works to advance public awareness of epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP), strives to improve communication about SUDEP between medical professionals and families impacted by seizures.
We raise epilepsy and SUDEP awareness through public outreach including radio PSAs, Billboards, school visits and social media. We educate on SUDEP by speaking, exhibiting and/or hosting conferences attended by researchers, neurologists, nurses, medical examiners and patients.

After Danny died, his family was determined to help other families avoid the treatment gaps that they experienced. One key gap was information about and access to monitoring devices that alert caretakers to seizure activity. To help protect kids who have epilepsy, and to help prevent future seizure-related deaths, we created an Seizure Device Subsidy Program. Alerting devices provide a parent the advantage of early intervention when a seizure occurs for their child. Devices are often underutilized by patients, or unknown as a resource. The majority of these devices are not covered by medical insurance. This lack of coverage is an access impediment for low-income families, as these systems typically retail for $500-$1,500, an expense that is difficult to meet when it falls atop other expenses such as medication, hospital stays, and travel to medical appointments.

The Danny Did Foundation believes that a global problem such as epilepsy deserves the attention of all of the globe's inhabitants. From grammar school students to nationally recognized epilepsy experts, we engage all with the knowledge that any person could discover answers to urgent questions in epilepsy.

Danny Did is a partner member of The SUDEP Institute, the North American SUDEP Registry, the Partners Against Mortality in Epilepsy conference, and the Centers for SUDEP Research consortium. We utilize this collaborations to move our goals ahead.

Danny Did is lead by our Co-Founders and has a strong, diverse and active Board of Directors. Danny Did is a partner member of The SUDEP Institute, the North American SUDEP Registry, the Partners Against Mortality in Epilepsy conference, and the Centers for SUDEP Research consortium.
Danny Did serves families all across the United States and has supporters in every state. We have an Ambassadors program in nineteen states. We have a Young Professionals Board in Chicago with satellite members in NY and CA. We also have Student Ambassadors in High Schools and Universities throughout the Midwest.

Since 2010, our signature seizure alert grant program has resulted in more than 1,200 grants to families spanning all 50 states and 11 countries. This program engenders an immediate impact, offering added safety for epilepsy patients, and peace of mind for their caregivers.


COMMUNICATIONS & AWARENESS:

* Our awareness programs have included both digital and traditional billboard messaging in greater Chicagoland, including a dedicated billboard campaign that is ongoing at O'Hare International Airport.

*We produce public service announcements annually, which have aired on multiple radio stations in both greater Chicago and greater Boston.

*On average, we produce more than 1,500 social media posts, featuring content on epilepsy, seizures and SUDEP awareness;

*On average, we distribute more than 55 e-newsletters annually, focused on epilepsy awareness;

*On average, we secure 15-20 unpaid media touches annually;

*We participate in 20-25 speaking and educational events each year.


ADVOCACY & PARTNERSHIPS:

*We have had leadership roles within advocacy partnerships, including – Partners Against Mortality in Epilepsy (PAME), the SUDEP Institute, the Epilepsy Leadership Council, Young Irish Fellowship Club of Chicago; the Northwestern University Dance Marathon, the Child Neurology Foundation, the Keep On Keeping On Foundation, Epilepsy Foundation of Greater Chicago, Epilepsy Awareness Day at Disneyland;

*We partner with research coalitions including the North American SUDEP Registry (NASR) and the Center for SUDEP Research (CSR);

*Annually, we grow participation in the DDF Ambassador programs via our parent, college and high school factions;

*We have expanded membership of the DDF Young Professionals board each year.


FUTURE GOALS

*Increase funding for our device grant program to reach 15 percent more families annually;

*Execute four large scale public awareness campaigns each year;

*Expand SUDEP education for medical professionals beyond epileptologists, to reach more general neurologists and general pediatricians.

Financials

DANNY DID 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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DANNY DID FOUNDATION

Board of directors
as of 12/18/2020
SOURCE: Self-reported by organization
Board co-chair

Caroline McAteer

DePaul University

Term: 2013 -


Board co-chair

Courtney Murphy

TPN Marketing

Term: 2014 -

Scott Verhey

Attorney

Douglas Bruno

DePaul University

Dan Kotowski

Illinois State Senate

Mike Stanton

Baird & Warner

Caroline McAteer

DePaul University

Courtney Murphy

TPN Marketing

Jerry Luo

Medical School

Jeanine McShea

@Properties

Lynn Hanley

Attorney

Margaret Storey

DePaul University

Mary Eileen Murtaugh

Chicago Public Schools

Julie Dix

Diane Garvey

Regina Dominican High School

Tracy Jablonski

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? No

Organizational demographics

SOURCE: Self-reported; last updated 12/18/2020

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Disability status
Person without a disability

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data