Dravet Syndrome Foundation, Inc.

Raising hope & changing lives through research

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

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

Kate Hintz

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.

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Communication

Blog

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?

DSF Research Grant Awards

The purpose of our Research Grant Program is to sponsor research directly related to Dravet syndrome and associated disorders.  Our research grants will 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

The International Ion Channel Epilepsy Patient Registry is a collaborative effort between University of Michigan and Miami Children's Hospital which is being co-funded by the DSF and ICE Alliance.  This registry will collect basic patient data and genetic test results of individuals with Dravet syndrome and related ion channel epilepsies worldwide and will be available to all interested researchers.  www.iicepr.org
 
The establishment of this registry will expedite future clinical trials and will serve to improve communication of ideas amongst interested researchers, as well as assure rapid distribution on any new information that may benefit patients and their families.

Population(s) Served
Children and youth

These listing allow parents and caregivers to find specialists in Dravet syndrome.

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

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

A little more than a 30% increase in attendees, allowed us the opportunity to educate even more families and professionals on the latest in research and treatment options for Dravet syndrome.

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

Increasing

Context Notes

This includes applications for our research grants, postdoctoral fellowships and clinical research grants.

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

Median grant amount is for a 2-year research project or clinician researcher award at $150,000. Our postdoctoral fellowships offer $50,000 for a 1-year grant.

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

Median grant amount is for a 2-year research project or clinician researcher award at $150,000. Our postdoctoral fellowships offer $50,000 for a 1-year grant.

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.

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. We are working with our Medical Advisory Board (MAB) to establish a consensus on treatments and best standards of care that will dramatically 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 group, biennial family conferences and our annual research roundtable.

Since our inception in 2009, we have funded over $4.95M in Research Grant Awards and over $178,000 in Patient Assistance Grants. We have hosted eleven 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 2016, we hosted our 2nd biennial family & professional conference, bringing together the entire families with the professionals who have a strong interest in Dravet syndrome. Our 3rd conference took place in July 2018 in association with Children's Hospital of Colorado. Out 4th conference, scheduled for June 2020, was postponed until June 2021 due to the pandemic.

We will continue with our current programs, while looking for additional unfilled niches 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.
  • Who are the people you serve with your mission?

    Patients affected by Dravet syndrome and their families.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person),

  • How is your organization using feedback from the people you serve?

    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,

  • What significant change resulted from feedback?

    Once we are able to host educational events live again, we plan to incorporate a hybrid live/remote approach that will allow patients and families access to the educational activities without traveling to the event.

  • With whom is the organization sharing feedback?

    Our staff, Our board,

  • How has asking for feedback from the people you serve changed your relationship?

    Our goal has always been to develop the resources and services which provide help and guidance to our patient families on this medical journey. Involving the patient voice assures we are on the right path and helps us prioritize the development and implementation of new initiatives.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, 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,

  • 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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Connect with nonprofit leaders

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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 5/3/2021
SOURCE: Self-reported by organization
Board chair

Nicole Villas

No Affiliation

Term: 2018 - 2021

Tim Wood

Jenny Tischer

Kate Hintz

Ted Odlaug

Ashley Kerns

Joseph Sullivan, 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 04/21/2021

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
Gender identity
Female, Not transgender (cisgender)
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 (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

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

Equity strategies

Last updated: 04/21/2021

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 employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
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.