PLATINUM2024

Dravet Syndrome Foundation, Inc.

Community. Research. Progress.

aka Dravet Syndrome Foundation   |   Cherry Hill, NJ   |  http://www.dravetfoundation.org

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Mission

The mission of Dravet Syndrome Foundation (DSF) is to aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families.

Ruling year info

2010

Executive Director

Mary Anne Meskis

Board President

Theron Odlaug, PhD

Main address

PO Box 3026

Cherry Hill, NJ 08034 USA

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EIN

27-0924627

NTEE code info

Fund Raising and/or Fund Distribution (H12)

Epilepsy (G54)

IRS filing requirement

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

Sign in or create an account to view Form(s) 990 for 2022, 2021 and 2019.
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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Better treatment options and eventually a cure for Dravet syndrome.

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?

DSF Research Grant Awards

The purpose of our Research Grant Program is to sponsor research directly related to Dravet syndrome and associated disorders. We offer five different funding mechanisms: Transformational Science Grants, Research Grants, Clinical Research Grants, Clinician Researcher Grants, and Postdoctoral Fellowships.

Our research grants fund initial research hypotheses that have not been fully explored. The results extracted from this type of research will help bring untested research to the point that it can qualify for larger governmental research funding.

Population(s) Served
Adults

This program offers grants to patients with Dravet syndrome and related epilepsies for necessary medical expenses associated with these conditions that are not covered through private insurance or other assistance programs.  Three percent of donations (after expenses) are allocated to this program.

Population(s) Served
Children and youth
Adults

This annual meeting allows researchers, geneticists, neurologists, clinicians and other professionals, with a strong interest in Dravet syndrome and related epilepsies, establish a “research roadmap”. By allowing this consortium of specialists to establish a plan, the DSF can facilitate the development and implementation of better treatments by funding research projects that address the critical challenges of this syndrome and which will offer the most promising breakthroughs at the fastest pace possible. This meeting takes place each year just prior to the commencement of the American Epilepsy Society (AES) Conference.

Population(s) Served
Adults

Individuals with Dravet syndrome have complex and lifelong neurological and medical needs that are unique. Often, a local care team is not familiar with Dravet syndrome or may not have had another patient with this diagnosis. A visit to a Comprehensive Care Center and/or a physician with expertise in the field of Dravet syndrome will benefit the patient and family, allowing them to connect with knowledgeable experts and form a bridge to their local care provider when complex issues arise.

Population(s) Served
Caregivers

The DSF Biennial Family & Professional Conference brings families together with leading clinicians and researchers to discuss new developments in Dravet syndrome and associated intractable childhood epilepsies. The event includes over a dozen topics, as well as parent-to-parent roundtables and opportunities for families to socialize. CME credits are available for professionals.

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.

Total dollar amount of grants awarded

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

DSF Research Grant Awards

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

In 2023, we had a one time Request for Applications for a $1M award for a 3-year project.

Total number of grants awarded

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

DSF Research Grant Awards

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of conference attendees

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

Caregivers, Families, People with diseases and illnesses

Related Program

DSF Biennial Family & Professional Conference

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

2022 was our first conference opportunity in person since the pandemic, allowing us to connect and educate families and professionals on the latest in research and treatment options.

Number of organizations applying for grants

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

DSF Research Grant Awards

Type of Metric

Input - describing resources we use

Direction of Success

Holding steady

Context Notes

This includes applications for the five grant mechanisms we offer, plus a unique Request for Applications for 2023 only.

Median grant amount

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

DSF Research Grant Awards

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

Our 5 grant mechanisms: Transformational Science Grants - $500k; Research Grants - $250k; Clinical Research Grants - $250k; Clinician Research Award - $75k; and Postdoctoral Fellowship Award - $75k

Average grant amount

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

DSF Research Grant Awards

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Our 5 grant mechanisms: Transformational Science Grants - $500k; Research Grants - $250k; Clinical Research Grants - $250k; Clinician Research Award - $75k; and Postdoctoral Fellowship Award - $75k

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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.

Our primary goal is to accelerate research in Dravet syndrome and associated intractable pediatric epilepsies, which we do through our research program, our patient registry and collaborations within the medical community.

Our second goal is to support and empower our patient and caregiver community through advocacy and education. We do this through our patient assistance grant program, family support group, website resources and our biennial Family and Professional Conference.

Our third goal is to educate the public and medical professionals to assure
more patients are properly diagnosed and treated. We do this through our Consider Dravet professional education program and our biennial Family and Professional Conference.

Our fourth and final goal is to continue to build and strengthen our organization in order to achieve our mission. We work towards this goal by expanding and adding to our program offerings, as well as by increasing our fundraising and awareness efforts.

We have six core programs that we utilize to accomplish our mission: DSF Research Grant Award Program; DSF Patient Assistance Grant Program; DSF Research Roundtable; DSF Biennial Family & Professional Conference; and Patient Advocacy Programs.

Our board of directors and staff are made up of a dedicated and diverse group of experienced professionals with non-profit, legal, educational and health experience. We have a Scientific Advisory Board (SAB) made up of the top researchers in the field, as well as a Medical Advisory Board (MAB) made up of top clinicians with experience in treating Dravet syndrome. Our SAB & MAB assist us by promoting DSF and its programs within the medical community.

We continue to enhance and grow our patient community support through our caregiver support group and a variety of informational resources for caregivers and families. In collaboration with our Medical Advisory Board (MAB) we helped to establish a consensus on treatments and best standards of care to improve quality of life, medical care and long-term survival. Through our "Consider Dravet" campaign, we offer professional outreach and education.

We offer access to the latest updates in Dravet syndrome through our social media accounts, e-newsletter, parent support groups, biennial family conferences, workshops, and our annual research roundtable.

Since our inception in 2009, we have funded over $6.7M in Research Grant Awards and over $219,000 in Patient Assistance Grants. We have hosted thirteen DSF Research Roundtables where we bring professionals with an interest in Dravet syndrome together to discuss current treatments and progress in the field. We have also established a Scientific Advisory Board and Medical Advisory Board.

We have an active social media following and offer a private caregiver support group where families can connect with one another. In June 2024, we will host our 6th conference is planned for June 20-22, 2024, in association with Mayo Clinic and the Minnesota Epilepsy Group in Minneapolis, Minnesota.

We will continue with our current programs, while looking for additional unmet needs within our community that need to be served.

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 look for patterns in feedback based on demographics (e.g., race, age, gender, 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, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, The people we serve tell us they find data collection burdensome

Financials

Dravet Syndrome Foundation, Inc.
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Operations

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

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lock

Connect with nonprofit leaders

Subscribe

Build 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.

Dravet Syndrome Foundation, Inc.

Board of directors
as of 04/16/2024
SOURCE: Self-reported by organization
Board co-chair

Theron Odlaug, PhD

TLGY Acquisition Corporation

Term: 2022 - 2025


Board co-chair

Ross Nicholas

Wadises

Term: 2021 - 2027

Joseph Sullivan, MD

Clare Carey

Nathan Batt

Joshua Goldman

Bradley Galer, MD

Gail Farfel, PhD

Bill Kirschner, MD

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 2/20/2024

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

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 02/20/2024

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

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.