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Marijuana-Derived Epilepsy Drug in Clinical Trial for Children

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By Juliana Bunim UCSF News

A new international, multi-center study led by researchers from UCSF Benioff Children’s Hospital is the first to evaluate whether purified cannabinoid is effective in treating severe forms of childhood epilepsy that do not respond to standard antiepileptic drugs.

“Better treatment for children with uncontrolled seizures is desperately needed,” said Maria Roberta Cilio, MD, PhD, principal investigator for the multi-center study and director of research at the UCSF Pediatric Epilepsy Center. “It’s important to get seizure control at any age, but in children, uncontrolled seizures may impact brain and neurocognitive development, which can have an extraordinary effect on quality of life and contribute to progressive cognitive impairment.”

The drug, called Epidiolex, is a purified cannabinoid that comes in a liquid form containing no tetrahydrocannabinol (THC), the psychotropic component in cannabis. Produced by the biopharmaceutical company GW Pharmaceuticals, Epidiolex is considered a schedule 1 substance by the U.S. Food and Drug Administration (FDA) and is closely monitored and restricted by both the FDA and U.S. Drug Enforcement Agency.

The trial will enroll a total of 150 patients across six centers. The study began earlier this month at UCSF Benioff Children’s Hospital and is also underway at NYU Langone Medical Center. Pending FDA approval, it will launch at four additional institutions this year.

“Studies have been conducted in healthy adults who have shown CBD to be well tolerated and safe,” said Joseph Sullivan, MD, co-investigator for the UCSF trial and director of the UCSF Pediatric Epilepsy Center. “While we don’t know the full side effect profile in children, this study will allow us to follow the children closely and determine if the side effect profile differs from that in adults.”

The patients are all between the ages of one and 18 with intractable epilepsies shown to be resistant to many if not all of the antiepileptic treatments, including drugs and a ketogenic diet. This includes children with Dravet syndrome, a rare genetic disorder that manifests in early childhood with frequent, disabling seizures often occurring daily and numbering into the hundreds, as well as profound cognitive and social deficits.

For one year the patients will be carefully monitored with seizure diaries and blood tests to measure the levels of the patients’ other seizure medications in order to learn about safety, dosage, effectiveness, and drug interactions.

“Studies in animal models have shows CBD works as an anticonvulsant, but this is just the initial exploratory step to determine whether further testing of CBD as an anticonvulsant is warranted, and how it will be conducted,” said Cilio. “Our current trial will hopefully lead to a placebo-controlled, blinded clinical trial in the types of epilepsy that respond best to CBD.”

UCSF Benioff Children’s Hospital was the first site to ever administer Epidiolex in children with epilepsy. In April 2013, the drug was given to two patients who were part of a special exploratory study approved by the FDA’s Investigational New Drug (IND) program, and results from that initial experience helped provide the framework for the current study, according to researchers.

“This trial is pioneering a new treatment for children with the most severe epilepsies, for whom nothing else works,” said Cilio. “But we are just at the beginning, combining experts in the field with a brave institution ready to take this on, and courageous patients looking for hope.”

UCSF Benioff Children’s Hospital creates an environment where children and their families find compassionate care at the forefront of scientific discovery, with more than 150 experts in 50 medical specialties serving patients throughout Northern California and beyond. The hospital admits about 5,000 children each year, including 2,000 babies born in the hospital.

 

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LIVE! — TOWN HALL ON RACISM AND ITS IMPACT — THURS. 11.14.24 5PM PST

Join us for a LIVE Virtual Town Hall on the Impact of Racism hosted by Post News Group Journalist Carla Thomas and featuring Oakland, CA NAACP President Cynthia Adams & other Special Guests.
Thursday, November 14, 2024, 5 p.m. – 6:30 p.m. PST

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Join us for a LIVE Virtual Town Hall on the Impact of Racism hosted by Post News Group Journalist Carla Thomas and featuring Oakland, CA NAACP President Cynthia Adams & other Special Guests.
Thursday, November 14, 2024
5 p.m. – 6:30 p.m. PST

Discussion Topics:
• Since the pandemic, what battles have the NAACP fought nationally, and how have they impacted us locally?
• What trends are you seeing concerning Racism? Is it more covert or overt?
• What are the top 5 issues resulting from racism in our communities?
• How do racial and other types of discrimination impact local communities?
• What are the most effective ways our community can combat racism and hate?

Your questions and comments will be shared LIVE with the moderators and viewers during the broadcast.

STREAMED LIVE!
FACEBOOK: facebook.com/PostNewsGroup
YOUTUBE: youtube.com/blackpressusatv
X: twitter.com/blackpressusa

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Oakland Post: Week of November 6 – 12, 2024

The printed Weekly Edition of the Oakland Post: Week of November 6 – 12, 2024

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OP-ED: The Illusion of Allyship. White Women, Your Yard Signs Mean Nothing to Me

NNPA NEWSWIRE – “The blue bracelets are something White women are wearing so others can see that they didn’t vote for Trump,” says Liberal Lisa from Oklahoma on X. Chile, bye. These bracelets are hollow symbols, empty gestures that mean nothing to me. An accessory to claim distance from Trump’s legacy is superficial comfort, while the choice to not stand with us in the voting booth is far more profound.

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Political yard signs can symbolize intentions and allegiance. But this year, they’ve also symbolized betrayal. During this general election, Black women were led to believe that more White women would stand with us. Exit polls, however, told a different story. Despite overwhelming displays of support, more White women still chose to vote for the convicted felon, reality TV star, and rapist. White women answered the call but left us hanging at the polls.

A Familiar Disappointment

I live in DeKalb County, Georgia, and the abundance of Harris-Walz yard signs could’ve fooled me. But I’ve seen this before, back when Stacey Abrams ran for governor. White women showed up, put up signs, attended rallies, knocked on doors, and phone-banked. Yet, when it came time to vote, they let us down—not once but twice. I’ve been here for over 15 years, and if there’s one thing I know, it’s that political signs are symbols without weight.

In every election, I’ve talked with White women. Most aren’t the primary earners in their families and vote along party lines, aligning with the preferences of their fathers and husbands. These conversations reveal a reluctance to break from tradition, even when their votes affect women and certainly when their votes impact the lives of people who look like me.

The Illusion of Solidarity—Symbols Are Not Enough

On social media, I’m seeing White women posting pictures of blue bracelets to “prove” they didn’t vote for Trump. “The blue bracelets are something White women are wearing so others can see that they didn’t vote for Trump,” says Liberal Lisa from Oklahoma on X. Chile, bye. These bracelets are hollow symbols, empty gestures that mean nothing to me. An accessory to claim distance from Trump’s legacy is superficial comfort, while the choice to not stand with us in the voting booth is far more profound.

I’ve seen Black Lives Matter signs and black squares posted on Instagram to “prove” support for Black people, but we now know that was a lie, too. Will those same people who claimed Black lives mattered now take down their Harris-Walz signs and show their true selves?

Navigating these truths is a daily struggle for me—professionally and socially. White women often misuse their privilege, supporting us only when it’s convenient. Seeing overqualified Black women sabotaged or abandoned by White women at critical moments is a constant emotional challenge. It’s exhausting to live with this reality, especially when solidarity seems like something they pick up and discard at will.

One clever campaign ad from Harris-Walz that spoke directly to White women. “Your Vote, Your Choice” emphasized that their vote was private—independent of their household situation. Another was from Olivia Howell Dreizen, the “Vote Without Fear” campaign, which empowered women to consider the greater impact of their choices. But it seems many still couldn’t choose the roadmap to freedom—even when it was handed to them.

A Call for Action Beyond Words

White women, I want to believe you care, but actions speak louder than yard signs, bracelets, or Instagram posts. Show up in our communities, advocate in your workplaces, and stand up to dismantle the structures that uphold white supremacy. Only through real action will we know where you stand.

If you choose not to act, we see you—and we know exactly where you stand. Good luck these next four years.

Disclaimer: The views and opinions expressed in this article do not necessarily reflect the official policy or position of BlackPressUSA.com or the National Newspaper Publishers Association.

 

 

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