Working Together

to find a Cure from Dravet Syndrome

Julian’s Awareness Movement (JAM) is inspired by our son Julian, who was diagnosed with Dravet at one year old. Not a single day passes by where Dravet isn’t at the forefront of everything we do. We want to change that.

We know the fear, loneliness, sleeplessness and other profound life alterations the diagnosis brings. We are also aware of the love, the strength, the courage, and the empathy this experience has awakened in us.

Let’s be with each other in all of this,
Dan & Deb Chang

let’s jam!

We’re accelerating cutting-edge pathways to a cure, raising awareness, and fostering a robust community of support for families affected by Dravet Syndrome.

LET’S JAM to find a cure. That cannot wait. A cure is freedom.

LET’S JAM to promote the most promising innovations.

LET’S JAM to make each day a little easier by sharing our experience and resources.

LET’S JAM in celebration of the moments of joy and connection—every note of music, every tiny victory, every feeling of hope.

We don’t know what the future holds, but we can be present for one another today. LET’S JAM.

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Grantmaking

JAM is committed to leaving no stone unturned when it comes to finding a cure and making life easier for families.

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Resource Library

Whether your child is newly diagnosed or you’ve been in it for years, this is the place to find and give the support we all need.

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Family Meet-Ups

There’s a kind of connection that only Dravet families share. When we come together there is joy, hope, generosity, and love.

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Facts About Dravet Syndrome

Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy, with an estimated incidence rate of 1:16,000 to 1:21,000 ^[1]

Dravet syndrome is a rare, catastrophic, lifelong form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures.

Previously known as Severe Myoclonic Epilepsy of Infancy (SMEI), it affects 1:15,700 individuals, 80% of whom have a mutation in their SCN1A gene ^[1].

While seizures persist, other comorbidities such as developmental delay and abnormal EEGs are often not evident until the second or third year of life.

Current treatment options are limited, and the constant care required for someone suffering from Dravet syndrome can severely impact the patient’s and the family’s quality of life.

Patients with Dravet syndrome face a 15-20% mortality rate due to SUDEP (Sudden Unexpected Death in Epilepsy), prolonged seizures, seizure-related accidents such as drowning, and infections ^[2,3].

Research for a cure offers patients and families hope for a better quality of life for their loved ones.

Learn More at DravetFoundation.org

Working Together

to find a Cure from Dravet Syndrome

let’s jam!

We’re accelerating cutting-edge pathways to a cure, raising awareness, and fostering a robust community of support for families affected by Dravet Syndrome.

LET’S JAM to find a cure. That cannot wait. A cure is freedom.

LET’S JAM to promote the most promising innovations.

LET’S JAM to make each day a little easier by sharing our experience and resources.

LET’S JAM in celebration of the moments of joy and connection—every note of music, every tiny victory, every feeling of hope.

We don’t know what the future holds, but we can be present for one another today. LET’S JAM.

Grantmaking

Resource Library

Family Meet-Ups

Facts About Dravet Syndrome

Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy, with an estimated incidence rate of 1:16,000 to 1:21,000 ^[1]

Dravet syndrome is a rare, catastrophic, lifelong form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures.

Previously known as Severe Myoclonic Epilepsy of Infancy (SMEI), it affects 1:15,700 individuals, 80% of whom have a mutation in their SCN1A gene ^[1].

While seizures persist, other comorbidities such as developmental delay and abnormal EEGs are often not evident until the second or third year of life.

Current treatment options are limited, and the constant care required for someone suffering from Dravet syndrome can severely impact the patient’s and the family’s quality of life.

Patients with Dravet syndrome face a 15-20% mortality rate due to SUDEP (Sudden Unexpected Death in Epilepsy), prolonged seizures, seizure-related accidents such as drowning, and infections ^[2,3].

Research for a cure offers patients and families hope for a better quality of life for their loved ones.

JAM for Dravet is a 501(c)(3) tax exempt status registered with the IRS under its Federal Employer ID Number 83-3636528 using its official legal name the Julian Chang Family Foundation for Dravet Syndrome.

Tax ID #: 83-3636526

Contact Us: [email protected]

Headquarters in San Francisco, CA.

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Working Together

to find a Cure from Dravet Syndrome

let’s jam!

We’re accelerating cutting-edge pathways to a cure, raising awareness, and fostering a robust community of support for families affected by Dravet Syndrome.

LET’S JAM to find a cure. That cannot wait. A cure is freedom.

LET’S JAM to promote the most promising innovations.

LET’S JAM to make each day a little easier by sharing our experience and resources.

LET’S JAM in celebration of the moments of joy and connection—every note of music, every tiny victory, every feeling of hope.

We don’t know what the future holds, but we can be present for one another today. LET’S JAM.

Grantmaking

Resource Library

Family Meet-Ups

Facts About Dravet Syndrome

Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy, with an estimated incidence rate of 1:16,000 to 1:21,000 [1]

Dravet syndrome is a rare, catastrophic, lifelong form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures.

Previously known as Severe Myoclonic Epilepsy of Infancy (SMEI), it affects 1:15,700 individuals, 80% of whom have a mutation in their SCN1A gene [1].

While seizures persist, other comorbidities such as developmental delay and abnormal EEGs are often not evident until the second or third year of life.

Current treatment options are limited, and the constant care required for someone suffering from Dravet syndrome can severely impact the patient’s and the family’s quality of life.

Patients with Dravet syndrome face a 15-20% mortality rate due to SUDEP (Sudden Unexpected Death in Epilepsy), prolonged seizures, seizure-related accidents such as drowning, and infections [2,3].

Research for a cure offers patients and families hope for a better quality of life for their loved ones.

JAM for Dravet is a 501(c)(3) tax exempt status registered with the IRS under its Federal Employer ID Number 83-3636528 using its official legal name the Julian Chang Family Foundation for Dravet Syndrome.

Tax ID #: 83-3636526

Contact Us: [email protected]

Headquarters in San Francisco, CA.

Newsletter Sign-Up

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Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy, with an estimated incidence rate of 1:16,000 to 1:21,000 ^[1]

Previously known as Severe Myoclonic Epilepsy of Infancy (SMEI), it affects 1:15,700 individuals, 80% of whom have a mutation in their SCN1A gene ^[1].

Patients with Dravet syndrome face a 15-20% mortality rate due to SUDEP (Sudden Unexpected Death in Epilepsy), prolonged seizures, seizure-related accidents such as drowning, and infections ^[2,3].

EMAIL ADDRESS:

YOUR NAME: