Vigabatrin evaluated for focal seizures in tuberous sclerosis in recent study

A study, “Vigabatrin for focal seizures in tuberous sclerosis,” found that [1]:

Vigabatrin (VGB) is used for focal seizures in tuberous sclerosis (TS) and may be an effective therapy in patients who fail to respond adequately to other anti-seizure medications while awaiting definitive epilepsy surgery.

Vigabatrin is well-established as the first-line therapy for infantile spasms in association with tuberous sclerosis, but less is known about its role in focal seizures due to tuberous sclerosis.

[Researchers] retrospectively identified 22 patients with tuberous sclerosis who received Vigabatrin for focal seizures, starting Vigabatrin in June 1989 and continuing through the present time. Nineteen (86%) had a history of infantile spasms and all except the two oldest, born in 1986, received Vigabatrin for infantile spasms. Eleven of these individuals exhibited improvement in or resolution of infantile spasms. Sixteen out of 17 with infantile spasms remained on Vigabatrin to treat focal seizures.

The risk for vision loss due to photoreceptor toxicity continues to limit prolonged use.

Chicago’s HAMILTON Miguel Cervantes Debuts New Original Song ‘Til the Calm Comes

Miguel Cervantes, who plays Alexander Hamilton in Chicago’s HAMILTON, is releasing a new original song ‘Til the Calm Comes about his family, wife Kelly, and their personal journey with their baby daughter Adelaide’s struggle with epilepsy.

The song and music video will be debuted live at the 19th Annual Citizens United for Research in Epilepsy (CURE) Benefit in Chicago on May 15th, 2017, alongside the Misericordia Heartzingers Choir. The song will be available for purchase on iTunes, and all proceeds will be donated to CURE.

Miguel is raising funds for CURE on behalf of his one-year-old daughter Adelaide. Adelaide suffers from Infantile Spasms (IS), a rare childhood epilepsy syndrome that can have profoundly negative long-term consequences. Starting at 7 months, Adelaide began having dozens of seizures per day and, as a result, has severe developmental and cognitive delays.

The CURE benefit will also feature Miguel and actors from the Chicago cast of HAMILTON performing pop hits and selections from some of Broadway’s greatest shows. More than 1,200 supporters attended last year’s benefit to celebrate CURE’s impact and helped raise close to $2 million for research. The organization was founded by David and Susan Axelrod and a small group of parents of children with epilepsy who were frustrated with their inability to protect their children from seizures and the side effects of medications.

This year also culminates their successful campaign for My Shot at Epilepsy, a fundraising effort led by Miguel and Kelly Cervantes.  The My Shot at Epilepsy campaign raised over $75,000 and released a widely seen PSA and Rap Video from Miguel.

Hamilton Star Opens Up About Daughter’s Epilepsy – “My Shot at Epilepsy”

As covered by The Chicago Tribune, Miguel Cervantes—the lead in the Chicago cast of “Hamilton”—and his wife, Kelly, are opening up about their struggle with epilepsy, teaming up with CURE to raise funds to find a way to defeat epilepsy. Cervantes, who performs seven shows a week, has recorded a public service announcement about epilepsy and, along with fellow “Hamilton” cast members, is offering to go caroling with one set of raffle-winning donors, host another set of raffle winners backstage during a holiday performance of “Hamilton” and perform a private cabaret for a lucky charity auction winner with deep pockets (bidding starts at $25,000).

Read more: Click here to participate in the campaign, see the prizes and view the PSA