PATIENTS

From the beginning, listening to patients and caregivers has been the heart of everything we do. Individual patient needs continue to inspire us to look into new therapeutic areas where cannabinoids may prove beneficial.

Scroll Arrow Icon

CHAMPIONS FOR PATIENTS

Bringing new therapies to those who need them most.

We’re motivated by the significant unmet needs of the patient community. Their hope for a better life inspires us to work tirelessly to find new ways to turn bold science into life-changing medicines, and create the accelerated pathways that bring new therapies to those in need faster.

Supporting families beyond medicine

unspokensymphony.com transforms artwork into original melodies

Inspired by a little girl who can’t speak but loves to paint, unspoken symphony transforms artwork into melodies, providing those who struggle to express themselves verbally a chance to communicate and connect with loved ones like never before. Create your own unique melody and receive an MP4 file of the music, along with corresponding sheet music, at unspokensymphony.com

RARE EPILEPSIES

What is Epilepsy?

Epilepsy is a neurological disorder characterized by at least two unprovoked seizures occurring in close proximity or by one unprovoked seizure with a high probability of further seizures.

Reference:

1. Fisher RS, Acevedo C, Arzimanoglou A, et al. ILAE official report: a practical clinical definition of epilepsy. Epilepsia. 2014;55(4):475-482.

Dravet Syndrome

Dravet syndrome is a rare genetic epileptic encephalopathy (dysfunction of the brain). It begins in the first year of life in an otherwise healthy infant. Prior to 1989, this syndrome was known as epilepsy with polymorphic seizures, polymorphic epilepsy in infancy (PMEI), or severe myoclonic epilepsy in infancy (SMEI).

References:

1. Dravet C. The core Dravet syndrome phenotype. Epilepsia. 2011;52(suppl 2):3-9.

2. Guerrini R, Falchi M. Dravet syndrome and SCN1A gene mutation related-epilepsies: cognitive impairment and its determinants. Dev Med Child Neurol. 2011;53(suppl 2):11-15.

3. Catterall WA, Kalume F, Oakley JC. NaV1.1 channels and epilepsy. J Physiol. 2010;588(pt 11):1849-1859.

4. Akiyama M, Kobayashi K, Ohtsuka Y. Dravet syndrome: a genetic epileptic disorder. Acta Med Okayama. 2012;66(5):369-376.

Lennox-Gastaut Syndrome

Lennox-Gastaut syndrome (LGS) is a type of epilepsy with multiple seizure types and characteristic slow spike wave EEG (during childhood). Intellectual development is usually, but not always, impaired. It is one of the more severe forms of epilepsy and is typically accompanied by developmental delay. Seizures are generally difficult to control due to their resistance to anti-epileptic drugs.

References:

1. Lennox WG, Davis JP. Clinical correlates of the fast and the slow spike-wave electroencephalogram. Pediatrics. 1950;5(4):626-644.

2. Gastaut H, Roger J, Soulayrol R, et al. Childhood epileptic encephalopathy with diffuse slow spike-waves (otherwise known as "petit mal variant") or Lennox syndrome. Epilepsia. 1966;7(2):139-179.

3. French JA, Kanner AM, Bautista J, et al. Therapeutics and Technology Assessment Subcommittee of the American Academy of Neurology; Quality Standards Subcommittee of the American Academy of Neurology; American Epilepsy Society. Efficacy and tolerability of the new antiepileptic drugs II: treatment of refractory epilepsy: report of the Therapeutics and Technology Assessment Subcommittee and Quality Standards Subcommittee of the American Academy of Neurology and the American Epilepsy Society. Neurology. 2004;62(8):1261-1273.

4. Niedermeyer E. The Lennox-Gastaut syndrome: a severe type of childhood epilepsy. Dtsch Z Nervenheilkd. 1969;195(4):263-282.

5. Bourgeois BF, Douglass LM, Sankar R. Lennox-Gastaut syndrome: a consensus approach to differential diagnosis. Epilepsia. 2014;55(suppl 4):4-9.

Tuberous Sclerosis Complex

Tuberous Sclerosis Complex (TSC) is a rare multisystem genetic disease that causes tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin. Over 85% of patients with TSC have seizures. Common seizure types include infantile spasms, focal, tonic, tonic-clonic, atypical absence, and myoclonic.

References:

1. Chu-Shore CJ, Major P, Camposano S, Muzykewicz D, Thiele EA. The natural history of epilepsy in tuberous sclerosis complex. Epilepsia. 2010;51(7):1236-1241.

2. Goh S, Kwiatkowski DJ, Dorer DJ, et al. Infantile spasms and intellectual outcomes in children with tuberous sclerosis complex. Neurology. 2005;65:235-238.

3. Theile EA, Granata T, Matricardi S, Chugani HT. Transition into adulthood: tuberous sclerosis complex, Sturge Weber Syndrome and Rasmussen encephalitis. Epilepsia. 2014;55(suppl.3):29-33.

Tools & Resources

Unspoken Symphony

unspokensymphony.com

Inspired by a little girl living with Lennox-Gastaut syndrome and tuberous sclerosis complex, unspoken symphony transforms artwork into melodies and provides those who struggle to express themselves verbally a chance to communicate and connect like never before. Simply upload your artwork, watch it magically turn into a unique melody and receive an MP4 file of the music, along with corresponding sheet music, to keep and share with loved ones!

Visit Website

Seizures are Signs, behind uncontrolled seizures could be a more specific diagnosis

Seizuresaresigns.com

For many families, relentless seizures are clues that help uncover an underlying diagnosis, such as Lennox-Gastaut syndrome (LGS), Dravet syndrome, or tuberous sclerosis complex (TSC). While everyone’s diagnosis story is different, many started by trusting their instincts and talking with their doctor. Knowing what questions to ask and how to explain the signs you are seeing is the first step to getting a more specific diagnosis. Seizures are Signs was created to help get the conversation started.

Visit Website

StraightFactsCBD.com

StraightFactsCBD.com

Navigating the world of CBD can be challenging. That’s why we created a resource for patients to know the facts. StraightFactsCBD.com is a go-to source to help patients better understand the CBD landscape as it stands today, including how to know what’s in a CBD product, why FDA approval matters, and how to separate fact from fiction in order to stay safe.

Visit Website

Cannabinoid Clinical, Learn about Cannabinoids

CannabinoidClinical.com

A resource for healthcare professionals, researchers, and patients with accurate, science-based information on the 3 different classes of cannabinoids, cannabinoid products and the FDA drug development process, and the difference between tetrahydrocannabinol (THC) and cannabidiol (CBD). It also includes tools, resources, links to articles and continuing medical education, and the opportunity to sign up for updates.

Visit Website

Advocacy Groups

Epilepsy Foundation Advocacy Group

Epilepsy Foundation

Mission: To lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

Visit Website

Dravet Syndrome Advocacy Group

Dravet Syndrome Foundation

Mission: To aggressively raise research funds for DS and related epilepsies; to increase awareness of these catastrophic conditions; and to provide support to affected individuals and families.

Visit Website

Lennox-Gastaut Advocacy Group

LGS Foundation

Mission: To improve the lives of individuals affected by LGS through research, programs, and education.
 

Visit Website

Tuberous Sclerosis Advocacy Group

Tuberous Sclerosis Alliance

Mission: The Tuberous Sclerosis Alliance is dedicated to finding a cure for TSC while improving the lives of those affected.
 

Visit Website

Child Neurology Advocacy Group

Child Neurology Foundation

Mission: To serve as a collaborative center of education and support for caregivers and their children with neurologic conditions.
 

Visit Website

CURE, Epilepsy Advocacy Group

CURE

Mission: To cure epilepsy, transforming and saving millions of lives. We identify and fund cutting-edge research, challenging scientists worldwide to collaborate and innovate in pursuit of this goal.

Visit Website

Pruple Day Advocacy Group

Purple Day Every Day

Mission: To make a kinder world for people with epilepsy and brain trauma through seizure first aid training, education and advocacy.

Visit Website

Epilepsy Alliance America

Epilepsy Alliance America

Mission: Epilepsy Alliance America is dedicated to supporting those impacted by epilepsy in local communities by confronting the spectrum of challenges created by seizures.

Visit Website