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Funeral today for 9-year-old girl waiting on medical marijuana
WGRZ ^ | July 23, 2014

Posted on 07/30/2014 4:02:34 AM PDT by Wolfie

Funeral today for 9-year-old girl waiting on medical marijuana

WEST SENECA, N.Y. -- Friends, family and community members crowded into a church in West Seneca Wednesday morning to say final farewells to a little girl whose story touched all of Western New York.

For more than 8 months, 2 On Your Side has been following the journey of 9-year-old Anna Conte.

Anna had Dravet Syndrome, which caused her to have uncontrollable seizures.

Anna and her family were relentless in pressuring state leaders to pass a medical marijuana program, because a special oil-based version of cannabis worked wonders for kids in other states where it was legal.

Finally, the state legislature passed a bill and Governor Andrew Cuomo signed it into law. However, at the governor's insistence, the State Health Department has 18 months or longer to get the program up and running.

That proved to be too long for little Anna. Earlier this month, a seizure put her in a coma, and she never recovered.

A fund has been set up in Anna's memory. You can donate to the "For the Love of Anna Needs Fund" at any M&T Bank branch in WNY.

The Conte's and other families continue to press the state to expedite access for medical marijuana for children who need it.

Christine Emerson's little girl Julia also has Dravet Syndrome. They were at Anna's funeral.

"The service was beautiful, and it was a great representation of who Anna was," Christine said. "Just full of life."

Christine has a simple message to Governor Cuomo.

"Flat out, it's just not good enough," Christine said. "It's not good enough, and if this were his loved one, I'm pretty sure that he would make a different decision. Our kids deserve better."


TOPICS: Culture/Society
KEYWORDS: cannabis; marijuana; medicalmarijuana; pot; wod
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To: longtermmemmory

Interesting, and good news...but from what I can see still not available to the public, only for clinical trials starting later this year.


81 posted on 07/30/2014 10:11:53 AM PDT by Wolfie
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To: Wolfie; longtermmemmory

“The Epidiolex IND [Investigational New Drug] is only going to allow for 25 of the most severe patients and there are many more than that,” - http://fox13now.com/2014/06/30/cannabis-oil-available-to-epileptic-children-for-treatment-starting-july-1/


82 posted on 07/30/2014 10:15:05 AM PDT by ConservingFreedom (A goverrnment strong enough to impose your standards is strong enough to ban them.)
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To: Ken H

All pot contains the same makeup as Charlotte’s Web. All pot. Substitutions could be made.

Charlotte’s Web does not contain any additional or differing chemical compounds. The only thing it has is a low THC content. That’s it. Many other pot strains also have low THC content.

This is all about using a little girl to further legalization of pot. I am all for its legalization, but it disgusts me that they would hide behind children.


83 posted on 07/30/2014 10:18:35 AM PDT by CodeToad (Arm Up! They Are!)
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To: ConservingFreedom
GW is doing great work though, although being a British company, their products aren't available in the U.S. The kicker is GW makes whole plant extracts, the same the the company that is making Charlotte's Web. Why some people are only content when a big pharmaceutical company does it is beyond me. In the end, I suspect they really don't care, they just want as many roadblocks in the process as possible. Luckily, they are losing that battle.
84 posted on 07/30/2014 10:40:09 AM PDT by Wolfie
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To: ConservingFreedom

it has been around quite some time. It has an “orphan drug” designation (iow it is still made via subsidies). It can and is used beyond your msm media source information.

Odd, you should be ecstatic a normal source is so all states can use it for legitimate treatment.


85 posted on 07/30/2014 11:15:03 AM PDT by longtermmemmory (VOTE! http://www.senate.gov and http://www.house.gov)
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To: longtermmemmory
It can and is used beyond your msm media source information.

Even its manufacturer says only 300 patients are authorized to get it: http://www.gwpharm.com/Epidiolex.aspx.

86 posted on 07/30/2014 11:22:49 AM PDT by ConservingFreedom (A goverrnment strong enough to impose your standards is strong enough to ban them.)
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To: nitzy
I have no idea what your point is, or what you're talking about.
So, here's a picture of a confused Pancake for your viewing pleasure.


87 posted on 07/30/2014 12:35:46 PM PDT by MaxMax (Pay Attention and you'll be pissed off too! FIRE BOEHNER, NOW!)
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To: ThePatriotsFlag

I think it is a shame they are using this little girl’s memory as an advertisement for pot.
*************************
I think it’s a shame so many people want to deny lifesaving remedies because they simply don’t comprehend that denying pharmaceutical research in the face of documented positive results just for the sake of maintaining a politically motivated ban is a losing proposition.


88 posted on 07/30/2014 12:44:27 PM PDT by Neidermeyer
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To: longtermmemmory

If the science was actually valid she already had access via prescription pills. If the dosage was the issue it can be reduced.
****************************
NO , you’re 100% wrong .. the oil extract is in clinical trials , you cannot get it at the CVS or Rite-Aid store ... This plant has hundreds of chemical compounds , some may be useful for treating conditions where current treatments are poor at best ... my sister (now in her late 40’s) has been on an anti-seizure med for most of her life .. it has some disturbing side effects and she has had problems with generics being a cause of seizures rather than a help.. My take is that her current drug isn’t a “good fit” for the symptom relief she needs ... Something might come out of this research , it certainly has shown benefits ... Why does it work? I’m not an organic chemist ... but there are THOUSANDS of drugs we use everyday that work wonderfully and we don’t have a clue why they work.


89 posted on 07/30/2014 12:54:51 PM PDT by Neidermeyer
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To: Wolfie

Marijuana can also trigger seizures. It’s a crap shoot.

It’s a terrible tragedy to lose a child.


90 posted on 07/30/2014 12:57:37 PM PDT by <1/1,000,000th%
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To: CodeToad
So you know more than the Epilepsy Foundation of Colorado?

See post #65

91 posted on 07/30/2014 12:59:19 PM PDT by Ken H
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To: Neidermeyer

You extract the chemistry, put it into pill or liquid format and sell and administer it as a medicine. You don’t have a little girl lighting up a joint! Don’t use this little girl’s demise to further your pothead habit. Go back to your bong...and please stay off the highway.


92 posted on 07/30/2014 2:19:00 PM PDT by ThePatriotsFlag ($$$$$$$$ DEFUND OBAMA! $$$$$$$$$)
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To: ThePatriotsFlag; Neidermeyer
Who said anything about a little girl lighting up a joint?
93 posted on 07/30/2014 2:44:50 PM PDT by ConservingFreedom (A goverrnment strong enough to impose your standards is strong enough to ban them.)
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To: Ken H

Probably. I don’t have an agenda as they do. Besides, foundations don’t know anything; they don’t exist. People exist. Name a person, and we’ll take it from there.


94 posted on 07/30/2014 3:41:37 PM PDT by CodeToad (Arm Up! They Are!)
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To: Wolfie

Nice try but pot makes the forum crazy.

They all become little Bill O’Reillys


95 posted on 07/30/2014 3:44:35 PM PDT by wardaddy (we will not take backour way of life through peaceful means.....i have 5 kids....i fear for them)
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To: <1/1,000,000th%

“Marijuana can also trigger seizures. It’s a crap shoot.”

Absolutely. Wife sees it every day. She has to deal with the medical issues pot smokers go through. Many patients have seizures and other pot related medical issues; everything from suicide to seizures to depression. It runs the course throughout psychiatry. People think they know something because they read it on the internet, but they really don’t.


96 posted on 07/30/2014 3:45:45 PM PDT by CodeToad (Arm Up! They Are!)
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To: CodeToad
Name a person, and we’ll take it from there.

Kristen Park, Chair, Professional advisory board, EFOC

Medical School - MD, Mayo Medical School (2002)

Residency Programs - Children's Hospital of Philadelphia Program, Pediatrics (2004)

Pennsylvania Hospital of the University of Pennsylvania Health System Program, Psychiatry and Neurology - Child Neurology (2007)

Fellowships - Children's Memorial Hospital, Chicago, Neurophysiology (2008)

_____________________________________________________________

The entire professional advisory board is here => http://www.epilepsycolorado.org/index.php?s=11260

So what are your credentials and why should we believe you over the EFOC?

97 posted on 07/30/2014 4:07:18 PM PDT by Ken H
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To: Ken H

What are your credentials to even judge either of ours? Read something on the Internet, and now you are a genius?


98 posted on 07/30/2014 4:12:13 PM PDT by CodeToad (Arm Up! They Are!)
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To: Ken H

And you know for a fact that this person, Kristen Park, supports pot for this? Have you read any of her research and can you tell us what it means if she has written anything? Does she have a liberal agenda? Loads of liberals have credentials and are completely wrong about their assertions.


99 posted on 07/30/2014 4:14:01 PM PDT by CodeToad (Arm Up! They Are!)
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To: G Larry

We will never know, but I’m willing to bet that it would not have hurt her as much as the seisure that took her life.


100 posted on 07/30/2014 4:19:55 PM PDT by Labyrinthos
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