Category Archives: Dravet Syndrome

Oh, Yes, She Did!

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2014-11-09 14.33.10Today, I added a new “first” to my list: I walked a 5K event. Other people at this event could say, “I ran a 5K race,” but I walked. I have to say that I was really nervous, since I have not done so well on the treadmill lately, and my trepidation grew even greater when I got winded walking from the parking lot to the starting line, but we toughed it out. David and I were eager to support the Epilepsy Foundation of North Carolina, and especially, as you can see on David’s shirt, our girl, Zora Carlin.

2014-11-09 15.08.26The sheer number of strollers and dogs involved helped to calm me down as we started the first lap of Tatum’s Trail, although the first leg was uphill all the way. I reminded myself that the first mile is always the hardest on the treadmill, and it was easier outside with pretty scenery and people to talk to. Not to mention the motivation that comes from being outpaced by two-year-olds and Chihuahuas.

2014-11-09 15.00.34We were still in the woods when we heard them announcing the winners in all of the categories, so I gave up my dreams of a trophy. We were not last, though! Seeing the kids who were benefitting from the walk made it all worthwhile. You don’t have to wait for such an occasion in your neck of the woods to contribute, though. The Epilepsy Foundation receives no government funding, so they would be glad to receive your donation any day of the year. You could bring smiles to the faces of families like the Carlins.

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Steve, Eva, Dawn, and Zora Carlin

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She’s Still Waiting. Here’s Why.

Zora Off to Kindergarten

Zora Carlin’s First Day of Kindergarten

Remember the battle we all fought last spring to legalize cannabidiol (CBD) extract for the children suffering from intractable epilepsy? Remember how exhilarated we all were when the governor signed the bill into law on July 3rd? We thought that was the end of the story, and now the children could line up for their medication and their lives would blossom into health and hope.

Well, the devil is in the details.

As soon as the bill was passed, amendments were added that required clinical trials at our local university hospitals. Now, that is not a bad thing in itself, as trials are important to establish the efficacy of new medications, but pilot studies and clinical trials are expensive, and the hospitals were reluctant to front the money. Doctors, with an eye to legal entanglements, were reluctant to prescribe a medication that had not passed tests. It’s a Catch-22. There has been a trial in New York using a European brand of CBD, but only the children in the study are able to access the drug.

The salient point for the families of children with intractable epilepsy is this: even though CBD is now legal in North Carolina, it is not available! Three hospitals are supposed to participate in a broader trial in a few months (UNC, Duke, and Wake Baptist), but the total number of patients tested will be 40—worldwide! Furthermore, this trial will be limited to Dravet Syndrome patients only; children with other forms of intractable epilepsy will not be part of the study, and will not have an opportunity to receive the drug. After the trials are over, there is no guarantee that the FDC will approve the drug, and even if they do, it could take years.

Unfortunately, synthetic variations of CBD are being manufactured by pharmaceutical companies. These synthetic CBD preparations do not have the success rate of the natural substance, and some unscrupulous companies are actually selling “watered-down” CDB oil as the real thing, as you can read in this article. However, there is just so much space in Colorado for growing Charlotte’s Web, the hemp strain from which CBD oil is extracted, and it is illegal to grow it here in North Carolina.

So, how about the kids? What was this all about, anyway? Did we pray, write to our representatives and senators, have difficult conversations with young congressional staffers, and relentlessly push all of our friends and relations to do the same so that doctors, hospitals, and pharmaceutical companies could hem and haw, worrying about their legal fees and their bottom lines? No! We wanted these suffering children to get help, and it turns out that those who were supposed to help them have suddenly realized that it is much easier to talk about saving sick children than it is to wade through red tape or take legal risks.

Charlotte's Web logoHowever, we are not without hope. Realm of Caring (RoC), the non-profit organization in Colorado that has been growing Charlotte’s Web and processing CBD for the past few years— as well as staging its own clinical trials and publishing the results— has established a liaison with Rep. Scott Perry (R-Pennsylvania), Rep. Steve Cohen (D-Tennessee), and Rep. Paul Broun (R-Georgia) to introduce a federal bill to legalize Charlotte’s Web. The goal of the bill is to establish what has been shown in state legislatures to be the simplest way to legalize cannabidiol: refine the definition of marijuana so that industrial hemp and cannabidiol do not fall under the current marijuana laws, since they are both just plant products that do not have psychotropic properties. This bill is called the Charlotte’s Web Medical Hemp Act of 2014, and is now H.R. 5226 in the US Congress. If the bill passes, it will be legal to grow and process cannabidiol anywhere in the US, greatly increasing the supply and availability. I won’t even begin to discuss the boon this would be to agriculture everywhere. Dwindling tobacco allotments? Not a problem anymore.

The Realm of Caring has posted the bill online and created a way for you to send a message to your federal representatives. Please click on the link for the bill above and let them know that you are in favor of getting this medication to suffering children all over America. After letting them know your thoughts, you can track the bill here. Can you see that it has a low expected success rate? That’s because not enough people have responded. Even if you drove your state representatives crazy with all of your phone calls and emails, your representatives in Washington, D.C, know nothing about this issue and will need lots of education. They need to know that their constituents care passionately about a topic that may seem esoteric to them. Don’t worry about bothering them; from the state of things, it doesn’t seem that they’re busy accomplishing anything else.

As you can see from the photo at the top, Zora has started kindergarten, with help from a wonderful team. You can follow Zora’s journey on her Facebook page. Thank you so much for caring.

Disclaimer: Any opinions expressed are just that: opinions. They are solely my own and do not necessarily reflect those of any of the families of children with intractable epilepsy.

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Victory for the Children

Families at legislative buildingNothing eloquent to write tonight. Just a full heart and the wonderful feeling of gratitude that so many individuals’ hard work came to a victorious conclusion today. Governor McCrory has agreed to sign House Bill 1220, which passed this afternoon. It gives me hope that sensible people can see the truth– if they have the right people to guide them along.

If you are one of those who wrote to her senator or representative, or who talked to his friends about it, or who called a legislator on the phone, I wanted you to see this picture of just a few of the families that you helped. Even if you just patiently listened to me blather on these past few months, thank you for being kind. And if you prayed, let’s all thank the Lord tonight– and tomorrow and tomorrow and tomorrow.

God bless you.

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It Passed the House!!!

File:NC Legislature.JPGNorth Carolina House Bill 1220, Hope 4 Haley and Friends, passed the full House on Thursday with the final vote 111 to 2! We are so thrilled. The two representatives who voted against are both Democrats, Rep. Dana Bumgardner from Gaston County, and Rep. Carl Ford from Cabarrus and Rowan counties. Interesting. You can see the official legislative record here.

I spoke with Acy Watson from Senator Brent Jackson’s office today, and he feels that the key in the Senate will be to get the bill through the Republican caucus, where it will land on Monday morning, June 23rd. That means that you only have tomorrow, Friday, to call your senator! Find out how here. Help him not to be afraid to vote in favor of legalizing cannabidiol to help children suffering from intractable epilepsy.

Our neighbor, Steve Carlin, will be on WRAL tonight at 11:00, and he hopes to get area neurologists, who work with these children every day, to educate the senators and the public on the safety and efficacy of this treatment. He shared a verse that his pastor brought to his attention concerning this struggle:

And I heard the voice of the Lord saying, “Whom shall I send, and who will go for us?” Then I said, “Here I am! Send me.” – Isaiah 6:8 (ESV)

What about you? Will you go?

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They Didn’t Want to Do It

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Rep. Pat McElraft

Rep. Mark Hollo, the chairman of the NC House Committee on Health and Human Services, canceled the meeting last night in which the Hope 4 Haley bill would have been considered.  Rep. Hollo had repeatedly refused to meet with families of children with intractable epilepsy, even when they showed up in his office. Needless to say, the parents of these suffering children were extremely discouraged last night, and could not be comforted by assurances that the bill would be taken up in the long session next year. Every day is precious for a child with constant seizures.

Unexpectedly, the bill (House Bill 1220) was added to tonight’s committee meeting, and our neighbor, Steve Carlin, was in time to speak to the legislators. By the time he was finished, there wasn’t a dry eye in the room, and the bill passed unanimously! What a turnaround in twenty-four hours!

Rep. Pat McElraft, the sponsor of the bill, expects that it will pass a committee meeting tomorrow morning, since many of the bill’s co-sponsors are on the committee, and then will make it to the full House by tomorrow afternoon. If all goes smoothly, it should reach the NC Senate by next week. Many thanks to Representative McElraft for her tireless work for these families.

Here’s the rub: The Senate does not want to hear the bill. They are still not educated about cannabidiol and believe that the bill is too controversial. It is an election year, and I suppose winning elections is more important to some of them than saving children’s lives. It is up to us to show them that the people of North Carolina have better values than that. Please find out how to contact your state senator here and let him or her hear from you by Monday. Think how many lives could be saved by just a phone call or an email!

Pray, pray, and then pray some more.

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Pray That It Will Pass

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NC Legislative Building

On Tuesday, May 27th, North Carolina Representative Pat McElraft introduced House Bill #1220, “Hope 4 Haley and Friends,” to the North Carolina Legislature. Haley is a little girl in Representative McElraft’s district with catastrophic epilepsy. We’ve been waiting so long for this to happen, and now the bill has 27 sponsors. If you are not familiar with this story, please refer to my blog posts beginning on January 17, then February 15, February 24, and March 10.

Children with catastrophic epilepsy and their families have been suffering needlessly because the treatment that has been most effective in slowing or stopping their seizures, a non-psychotropic oil extract from the cannabis plant, is illegal in most states. Families have been forced to live apart so that one parent can go to Colorado with the child for treatment, while the other stays home to work and support them. These children often have dozens of seizures every day, and without this treatment they will die, as traditional medicine has utterly failed them.

Zora CarlinHere are two news reports that will give you the details on the new bill, one from WCTI-12, and the other from NBC-17 (WNCN).    Haley, for whom the bill is named, is in the WCTI report, and our neighbors, the Carlins, are in the NBC-17 report. You can read the full text of the bill here. If you wish to stay up to date on this issue, be sure to follow the Carlins’ Facebook page at Zora’s Journey with Dravet Syndrome.

Now is the time for action. There will be many state legislators who will see a medical marijuana bill and automatically say no. This is further complicated by the fact that another representative has introduced a broad medical marijuana bill, and the legislators may conflate the two bills. Whether or not you support medical marijuana in general, the “Hope 4 Hayley and Friends” bill is a slam-dunk for any thoughtful, caring person, especially since the oil has no mind-altering effects and is, obviously, not smoked. We seem to have a lot of support in the state house right now, but the senate may be a different story. Please call or write to your North Carolina state senator to let him or her know that you support House Bill #1220. You can find out who your legislators are and how to contact them here. And remember to pray. Pray for passage of the bill, and pray that it will pass in time to help the children who are waiting.

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Things Are Starting to Happen!

ImageThe logjam of legislative inertia is beginning to creak and shift. Representative Pat McElraft, of Carteret and Jones counties, plans to introduce a bill into the North Carolina House of Representatives to legalize Charlotte’s Web in North Carolina.* On WRAL’s 6:00 News tonight, Rep. McElraft participated in an emotional segment that followed up on the station’s report on Dravet Syndrome a couple of weeks ago. You can view the video here. Ms. McElraft plans to call the bill “Hope for Hayley,” after a little girl in her district who has Dravet Syndrome.

Many residents of NC have been working tirelessly to find someone in the legislature to take the lead on helping Dravet Syndrome children, but it has been difficult. Although several members were sympathetic, no one has stepped forward publicly until Representative McElraft. If you feel moved to thank and encourage her, as I did, please drop her a line at Pat.McElraft@ncleg.net.

Bruce Mildwurf, of WRAL, also deserves a great deal of credit for his excellent reporting, which I’m sure moved many people to action on this critical issue.

As the news report states, now is the time to write or call your own representative and senator to let them know that you support the “Hope for Hayley” bill. Even if you have written to them before, now that the bill is named, you can be more specific in your request. You can find out who your legislators are and how to contact them here. It is so easy to write a few lines to let them know that their constituents care about these suffering children.

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*If you are new to this conversation about Dravet Syndrome and Charlotte’s Web, please read three previous posts on this blog, beginning with January 17, then February 15, and February 24.

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