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March 5, 2015

Parents Feel Marijuana Oil Will Aid Child - But Can’t Buy It

By Kimberlee Kruesi

Associated Press

Boise, ID(AP) Ten-year-old Alexis Carey has a rare but intractable form of epilepsy, Dravet Syndrome. The genetic disease causes severe and multiple seizures, which often leave parents guessing if the terror of watching their child seize up will pass or turn fatal.

Her Boise, Idaho, family learned that oil extracted from marijuana had helped other children and wanted to see if it would help Alexis too.

``Parent to parent, when you’re in a small community and 10 people that you know are all having success, that’s no longer anecdotal,’’ Clare Carey, her mother, said. ``That’s hope.’’

But Idaho’s stringent marijuana laws do not allow for medicinal use. The family began lobbying lawmakers to decriminalize the oil almost two years ago. Now, they’ve got some legislative backers and an upcoming hearing, as Idaho joins a larger movement to loosen laws to allow the use of marijuana extract oil.

Twelve states have legalized the oil while still banning medical marijuana. Virginia legalized the oil Feb. 26. In Utah, lawmakers have given initial approval to let those with chronic and debilitating diseases consume edible marijuana products, while still banning smoking.

Cannabis oil

Marijuana extract oil first received attention when a Colorado family fought and won for access for their daughter who also had Dravet Syndrome. It is similar to hemp oil, which is legal in Idaho and can be bought in grocery stores.

With no known cure for Dravet Syndrome, children are often prescribed a cocktail of medications to counter the seizures. However, the heavy drugs often come with side-effects that can permanently damage a child’s developing liver, kidneys and other organs.

Proponents of cannabidiol oil, a non-psychotropic extract of marijuana, argue that it reduces the amount and length of seizures in children.
Over time, Carey hopes that the oil would also reduce the number of medications her daughter relies on.

``Like any parent, you never give up hope that you can get complete seizure control,’’ she said. ``Children die from Dravet by any one of the seizures. Alexis could have a seizure that may not stop, we never really know.’’

Alexis began having seizures when she was two months old. But even in 2003, her mom says a lack of awareness of the disease led to many doctors not automatically suspecting it could be a rare, genetic disorder.

It wasn’t until Alexis lost all speech and potty control when she was 2 that doctors determined she had Dravet Syndrome, Carey said.

Since then, Alexis’ parents have put her on a variety of diets and medications to help reduce the seizures but the disease is tricky to manage. Dravet Syndrome often causes a variety of different kinds of seizures but medications typically target one particular type.

Alexis’ seizures usually occur at night, which means one of her parents regularly sleep with her and monitor her sleep patterns. During the day, Alexis requires constant supervision. While most 10-year-olds freely run and jump around, Alexis walks, albeit sometimes unstably and with help going up and down stairs.

Carey says working with Idaho’s Republican-controlled Legislature has been easier than anticipated.

Lawmakers who resisted the idea at first blush have warmed up to the idea, she said.

This year, the bill is endorsed by Republicans Sen. Curt McKenzie and Rep. Tom Leortscher. Both are chairs of the legislature’s State Affairs Committees, panels that often get tossed controversial legislation and have a high bar for clearance.

The measure unanimously passed the Senate committee during its introduction hearing, which means it now goes on to a full hearing in front of the committee.

Yet the bill must survive a Statehouse that approved a resolution in 2013 vowing never to legalize marijuana for any purpose.

No One Can Help This Feeling, Mr. Spock— You Inspired Us

By DERRIK J. LANG

AP Entertainment Writer

Los Angeles (AP) Leonard Nimoy didn’t just leave a lasting impression on the science-fiction world, he also left his mark on science itself.

Seth Shostak, who researches the possibility of real-world extraterrestrial life as the senior astronomer at SETI Research, recalled that Nimoy was regularly willing to lend the organization a helping hand. When he was asked to narrate a planetarium introduction or appear as a guest at an event, Nimoy did so graciously and never charged.

``That struck me then, and it strikes me now,’’ said Shostak. ``If you play a famous alien, you might have little interest in how science is searching for real aliens, but Nimoy was actually interested in the science—and he was always willing to help us out.’’

Remembrances poured in from beyond the entertainment spectrum after news spread Friday about the death of the 83-year-old actor, who played the half-alien, half-human Spock in ``Star Trek’’ films, TV shows and video games. NASA, Virgin Galactic, Intel and Google all sent messages, as did other groups motivated by Nimoy and his role as the truth-seeking science officer.

Nimoy as Mr. Spock in Star Trek

``Leonard Nimoy was an inspiration to multiple generations of engineers, scientists, astronauts and other space explorers,’’ said NASA administrator Charles Bolden. ``As Mr. Spock, he made science and technology important to the story, while never failing to show, by example, that it is the people around us who matter most.’’

NASA posted a photo online taken in 1976 of Nimoy and his ``Trek’’ cast mates in front of NASA’s real-life space shuttle Enterprise, parked outside the agency’s manufacturing facilities in Palmdale, California.

Samantha Cristoforetti, an Italian astronaut aboard the International Space Station, similarly tweeted her condolences from space.

``Live Long and Prosper, Mr. (hash)Spock!’’ she wrote.

Don Lincoln, a senior physicist at Fermilab, said he was inspired to go into science not just because Nimoy’s portrayal of the logical Mr. Spock but also because of ``In Search of...,’’ the curious 1970s TV series hosted by Nimoy that was dedicated to mysterious phenomena.

``Despite the fact he worked in fiction, anyone who can inspire that many people to look into the sky and wonder has done something really important for mankind,’’ he said.

Leonard Nimoy in recent years

Lincoln noted that ``Trek’’ and the character of Spock, armed with his Vulcan nerve pinch and phase set to stun, provided the world with a dynamic look at someone interested in science.

``The fact is that Spock was a cool geek,’’ said Lincoln. ``Scientists are not always portrayed as being very strong. Usually, they’re the guy with the tape on their glasses and their pants too high. He was clearly a person who had desirable components beyond just being smart.’’

Nimoy’s commitment to astronomy frequently warped from beyond the Alpha Quadrant and into the real world. He and his wife, Susan, donated $1 million to the renovation of the iconic Griffith Park observatory complex overlooking Los Angeles. The observatory’s theater is named after Nimoy.

``Mr. Nimoy was committed to people, community and the enlarged perspective conferred by science, the arts and the places where they meet,’’ the observatory said in a statement. ``The theater honors Nimoy’s expansive and inclusive approach to public astronomy and artful inspiration.’’

The actor, director and photographer narrated several films focusing on astronomy, including a 2012 short film about NASA’s Dawn mission and the 1994 IMAX documentary film ``Destiny in Space.’’

``All I can say is if and when we pick up a signal, it’ll be wonderful if the real aliens are half as appealing as Mr. Nimoy was as Spock,’’ said Shostak of SETI Research.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


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