SILVER2024

Kcnt1 Slack Epilepsy Foundation Inc

Hope is On the Horizon

aka KCNT1 Epilepsy Foundation   |   Scottsdale, AZ   |  https://kcnt1epilepsy.org

Mission

The mission of the KCNT1 Epilepsy Foundation is to support research and drug development efforts focused on finding a cure for KCNT1-related pediatric epilepsy. The KCNT1 Epilepsy Foundation supports the KCNT1 community with educational resources and the latest research information.

Notes from the nonprofit

The KCNT1 Epilepsy Foundation is dedicated to finding new treatments and eventually a cure for KCNT1 related disorders. The myriad of disorders range from drug-resistant pediatric epilepsy, heart and lung issues, motor dysfunction, sleep disorders and behavioral issues. Most individuals will require care for the remainder of their lives. Because of the interrelated networks of the brain, it is likely that research will uncover the connections of KCNT1 to other brain disorders such as TBI, eating disorders, Alzheimers and genetic epilepsies such as Dravet syndrome. Your investment in KCNT1 research and our foundation can have a ripple effect into other areas, and because we are a transparent organization with low overhead, you can be assured your donation will be used wisely. Thanks for your consideration.

Ruling year info

2021

President & Co-Founder

Justin West, MD

Executive Director

Sarah Drislane

Main address

9393 N 90th St Ste 102-512

Scottsdale, AZ 85258 USA

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Formerly known as

KCNT1 Slack Epilepsy Foundation

EIN

84-2748218

NTEE code info

Epilepsy (G54)

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

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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 Registry

The KCNT1 Epilepsy Foundation aims to support basic science and clinical research as well as drug discovery programs with a goal of finding a cure as soon as possible. Part of this goal requires we manage a patient registry database on a secure technology platform. The registry allows patients from around the world to input their data and provides the Foundation with a mechanism to contact them when trials become available. The registry uses an IRB-approved study protocol to collect data over time that can be used by researchers and drug developers. The data will help the research community in understanding how the health of children with KCNT1-related epilepsy changes over time, how the disease affects families, and what the family priorities are in terms of treatment goals.

Population(s) Served

Ongoing data analysis efforts track clinical characteristics and symptoms of the disease, what medications and therapeutics work, and how this disease effects families over time. Some of this is with data captured through our registry, and also includes a sponsored natural history study. These efforts require the help of a patient registry manager, clinical psychologists, physicians, data scientists.

Population(s) Served
Adults
Children and youth

With this ultra rare disease it is important parents have support and a source of information on symptoms and treatments. The Foundation provides ongoing webinars and hosts a website that is continually updated with the latest publications, patient informational handouts and treatment approaches. In addition the Foundation hosts a Facebook page and participates on several private Facebook support groups.

Population(s) Served
Adults
People with diseases and illnesses
Adults
People with diseases and illnesses

Where we work

Affiliations & memberships

GreatNonprofits 2023

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • 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 identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • 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 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

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback

Financials

Kcnt1 Slack Epilepsy Foundation Inc
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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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Connect with nonprofit leaders

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  • 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.

Kcnt1 Slack Epilepsy Foundation Inc

Board of directors
as of 02/11/2024
SOURCE: Self-reported by organization
Board chair

Owen Billman

Blake Real Estate

Term: 2023 - 2025

Norman Metcalfe

Tejon Ranch Company

Jason Kaufman

The Chertoff Group

Margot Goodkin, MD

Abbvie Inc

Morisette Royster

CDLS Foundation

Joe Ricculli

Regeneron Pharmaceuticals

Samantha MacMechan

Justin E West

Finesse Plastic Surgery

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 12/30/2023

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
Heterosexual or Straight
Disability status
Person without a disability

The organization's co-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

Gender identity

Transgender Identity

Sexual orientation

Disability

Equity strategies

Last updated: 12/30/2023

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.