Category Archives: Current Events

I got soaked at the Hose the House fundraiser for Journey of Hope.

This last week did not get off to a great start. I’ve mentioned we’ve had some issues with an increasing number of seizures breaking through in spite of the modified Atkins diet. We finally bit the bullet and raised his vigabatrin dose Tuesday night when not only were we seeing him have 2-3 a day of his typical seizures, but then he also appeared to be having some sort of activity with no clear stop and start — he just wasn’t right. His eyes would look unfocused and he was physically weak. Sometimes after a rough seizure he has trouble moving around and his arms can’t support him when he crawls, but that’s not always the case and it usually goes away in 30 minutes. But he was like this for three days. I had hoped the diet would be successful enough to allow him to wean meds, but it appears he needs the combination of a therapeutic dose of vigabatrin with the diet. He had gained five pounds since the last time we adjusted his meds, so clearly vigabatrin is just far too essential to his well being. We have now gone four days without seeing any seizure activity since the upped dose and he’s back to his normal active self — a great relief as the idea of possibly having to relocate to Colorado had started rear it’s ugly head again. We are trying to hold on with traditional medicine until the option of medical cannabis is available closer to home.

After all that, it seemed like an appropriate way to end the week by taking part in the fundraiser for Journey of Hope, a charity started by Rep. Allen Peake (who sponsored HB 885 this past session in an unsuccessful attempt to legalize CBD oil here in Georgia) to help families, who have exhausted traditional medical approaches to treating their children’s seizure disorders, relocate to Colorado to get the medicine they need. It all started several weeks back when Kim Clark challenged Corey Lowe to the cold water challenge, a method of raising money for charity via the Internet that has gone viral recently. Kim (a mom from Georgia treating her son Caden in Colorado) challenged her on behalf of Realm of Caring, the nonprofit that has become famous for providing the strain Charlotte’s Web to sick children at a reasonable cost. Corey (a mom from Georgia who will soon take her daughter Victoria to Colorado) chose to challenge more people on behalf of Journey of Hope which started the chain of events that led to me floundering my way into an inflatable pool ring in an Olympic sized pool Saturday morning in the Hose the House for Hope event.

Several representatives, senators and Georgia law enforcement officers accepted the challenge to raise money and participate, jumping into the pool to swim out to the moms from families that were involved in fighting for HB 885. You could also pay $50 to douse a participant of your choice in ice cold water. Oh, and some of the dads dressed up…but I’ll let the photos do the talking on that.

I am happy to say that this much money has been raised so far:

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If you are interested in making a donation, please check out the web site for more information — Journey of Hope.

Most of the photos are mine, but a few are borrowed from Facebook…please let me know if you want credit for a photo. I didn’t pay attention when I snagged them 🙂

I'm impressed my pasty white legs didn't blind anyone.
I’m impressed my pasty white legs didn’t blind anyone.

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Oh, and those dads I mentioned…

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Let Our Voices Be Heard

Guest Post by Mixed Up Daddy

I beg you to take the few minutes it will take to read this and the few minutes it will take to act. We can make a difference if we stand together.

Quickly, let me apologize to those that come to this blog to get updates on Connor. I swear I, Mixed Up Daddy, am not trying to highjack this blog with political rants, and my wife will get back to writing posts on Connor, but she has graciously allowed me to write one more post about politics, and what I feel should be the most important issue for everyone – being heard in our government process.

Based on my friends who span all parties and political groups, and who disagree on many topics, the topic of “being heard” has bipartisan support. Let me also say that this is not just a topic on Georgia state politics (although I may reference Georgia as an example since that is where I reside), but most states and our federal government.

As we saw in Georgia on Thursday March 20th, the last day of our legislative session, once again our elected politicians chose to ignore the majority of their constituents and either never vote on bills, or defy the overwhelming majority of the public and vote the other way on bills. Rest assured this is happening in every state.

No instead we have politicians like Georgia State Senator Renee Unterman tweeting out 4 hours before the end of the session that others were tearing up paper in preparation for their confetti to celebrate the end of the session. (In Georgia our congressmen and congresswomen feel it is okay to “trash up” their chambers, and celebrate that they have screwed over Georgians once again.) We also have childish games like those played by Georgia Lt. Governor Casey Cagle who refused to bring bills up for votes in the senate because the house wasn’t moving on senate bills. We are being led by a bunch of adults who act like 3-year-old children!

All too often I hear those in the general public say, “This issue is so obvious, why can’t or won’t our government pass it?” I am guilty of it as much as anyone else. Well this is our chance to change things. The time is now for us to tell our elected politicians that we, the 99% that cannot buy politicians, votes, and laws, demand our voices be heard, we demand to be truly represented, and we demand to have our votes counted.

There is no reason in this day and age that we as “the people” are not allowed to vote on certain issues faced by our states and country. Some will say, “What are you talking about, we have free elections and thus get a say in our government?” Do we? Yes we get to elect those who you will represent us, but are they really representing us? There are many issues that we the general public can’t agree on, but there are quite a few that have overwhelming support in the general public, but never seem to get passed by our government (at the state or federal levels). There are some great politicians at state levels and at the federal level, but unfortunately there are far too many more that only represent their donors (the individual donors, corporate donors, and lobbyists). Let’s face hard facts, the more you donate the more you matter. Unfortunately most Americans do not have the ability to donate to campaigns, and thus are ignored by their elected politicians. The politicians will claim this is not true, but the American people are not as stupid as they think.
So how can we solve this problem? This can be solved by letting the people be heard. There are a few states that actually are progressive enough to allow this, but far too many do not, and the federal government does not. What am I referring to? Let the general public vote on certain initiatives and referendums. There is no reason this whole map is not dark blue.

I am not saying that every single initiative and referendum should be voted on by the general public, but there are certainly some that have such widespread support either for or against that they would be able to garner a certain number of signatures on a petition to get added to the ballot.

Of course most politicians would balk at this idea. They will claim that we have a democratic process already. That is partly true. Times have changed though and are changing more and more each day. This isn’t 200 years ago, 100 years ago, or even 50 years ago when we had to elect individuals to represent us because we couldn’t get our messages out. These days we have 24 hour news and can contact anyone, anywhere, at any time via cell phones, emails, etc. Our voices can be heard now. And they should be heard now.

Our politicians have no problem getting involved in the politics of other countries, demanding that they allow the democratic process to prevail, yet they will not allow that full democratic process here in America. Don’t get me wrong, we still have a better process then most countries, but it can be better and more democratic.

Some politicians will state that we can’t allow this because of certain laws, well guess what, you make the laws and can change them, and we are demanding that you do. Remember Mr. or Ms. Politician, you work for us.

So what can be done? I am here to ask for everyone’s help on this. I am begging for your help on this. If you ever get involved in any issue, this is the one I am asking for help on.

Contact your duly elected officials (you can find out who your elected officials are here, ) and demand to get their opinion on this topic and ask them if they will take the lead on this issue. If they say they aren’t for this or won’t take the lead on this, let everyone know, and vote them out.
If they claim they are for it and will take the lead on this issue, let everyone know, and if they don’t hold up to their end of the bargain let everyone know that, and vote them out.

Contact the media and demand that they bring this topic to the forefront of their reporting and keep it there until it is enacted in every state and at the federal level.

If you are not comfortable writing to politicians and the media, write them a simple note saying you want their opinion on this matter and send them to this page and let them know this is an issue you want to know their opinion on (politicians) and want reported on (the media). If your elected official does not get back to you or ignores you (such as my state senator Judson Hill who ignores the dozens of his constituents that I know that have contacted him), keep on them, and let everyone know they are ignoring you, and vote them out.

Demand that they take action on this now, not “some point in the future because we have more pressing issues”. There is no more pressing issue than letting everyone have a voice (vote). If your state is like Georgia and is only in session 40 days a year, and won’t be back until next January, demand a special session. Of course the politicians will say this takes money we don’t have, but they waste money each and every day, and each and every year in their budgets. Nothing is more important than allowing the American people to be heard. What are they afraid of? Don’t tell us you will take it up in the next session (next January) hoping we will forget about it. This will probably be a common reply as this is a big election year, and they hope they can ignore this issue right now, and then have the American people forget about it by the time the next big election rolls around in two year. Take it up now. If they don’t, or don’t vote for it, vote them out. Vote them out this year.

If your state requires that the governor call the special session, demand that they do. If they don’t, vote them out.
Let’s be honest, this special session should not be a long one. If we can get our voices heard, they will know that this is what their constituents are demanding and that this should be passed. If it is not passed, vote them out.

I also know there are a lot of people out there that say they will never vote for a democrat or never vote for republican, but if your elected politician will not get behind this and take the lead on this and vote for this, no matter what political party they are with, vote them out.

The last time I checked this was a nation “by the people, for the people”. We deserve to have a bigger say in our government. As we see each and every day, each side of the isle, at every level is playing games. Well our lives and our country are not a game. Since they will not represent us, it is time we force them to allow us to have more of a say in our lives and our country. Let’s show the world what a real democratic country should be like. And if they won’t allow us to have more of a say, vote them out.

Let’s come together and not allow them to ignore this issue “because it is an elections year” like they do every other year with pieces of hard legislation. This is an issue to be taken up now, otherwise, vote them out.

Please share this will as many people as you can. The only way we can have change is by having our voices be heard. If we, the 99% that can’t buy politicians, votes, and laws, band together we can finally force our politicians to listen to us. Only then will we be able to have a say, and finally get to have votes on the issues that so many of us can agree on, but they will not act on.

HB885 — the Georgia medical cannabis bill — died tonight.

And when it died, this is what it looked like.

1461321_10203535527814157_581029929_n-1Glad I couldn’t make it down there today. I wouldn’t have wanted to watch this celebration in person. I’m so sorry for those parents that did have to see it live. A  live stream was more than enough for me. I cannot begin to express the countless hours, time and money (parking, travel, childcare) that these parents put into this. Representative Allen Peake did everything he could and for that we are thankful.

Short version — most of which I stole from someone on Facebook — because I’m tired, ticked off and feeling a migraine coming on:

The Senate refused to pass HB 885 unless an autism insurance bill was attached because the House refuses to vote on the autism bill alone. Senate passed HB885 with the autism bill attached, then sent to the House who refused to vote on it with the attached autism bill. 

Then late tonight, with HB 885 stalled in the House, the House sent SB291 (already passed in the Senate and unrelated to HB 885) to the Senate for a vote with the HB 885 language included. Senate refused to vote on SB 291 because it did not have the desired autism language.

And with that, the state of Georgia made it clear that it does not care about kids whether they have epilepsy or autism. But they do care about their end of the night paper party!

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An Open Letter to Senator Judson Hill of Georgia District 32

[Update: Judson Hill stepped down from the state senate in 2017 to run for the the seat left empty by Tom Price, who accepted a role in Donald Trump’s administration. Please read this if you are considering voting for him]
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Dear Senator Judson Hill,

I am shaking with anger right now. The Georgia Senate just voted moments ago on HB 885, the medical cannabis bill. As it was discussed, my son’s 12-day seizure free streak ended at my feet. The bill passed 54-0. Two people didn’t vote. Where were you?

You have constituents that have tried to reach you for months. You have blown us off. You have tweeted and posted about your work on on SB 98, a bill to prevent healthcare plans from funding abortions. But you are silent on two bills that help children who have already been born.  Two bills to benefit children: one bill to make insurance companies provide coverage to children who need therapy due to an autism diagnosis and another to help parents obtain a medicine that could help children with severe seizure disorders, and you did not vote on either. Why? Clearly, you have constituents that want to be represented. Perhaps I’m outnumbered? Maybe you heard from more people that didn’t want you to support these measures than did support. In that case, you didn’t represent them either.

I first e-mailed you on January 9. I did not hear from you, but given that the bill started in the House, I figured there was time, and that I’d hear from you when it became a Senate issue.

I e-mailed you again on January 31.

And February 6.

And February 24 in regards to SB397–the autism bill you didn’t vote on.

And March 7. Twice.

And March 11.

Plus an e-mail from my husband.

On February 5 we had a scheduled face-to-face meeting. I came down to the Gold Dome with my son and arrived at your office at the scheduled time. You were not there. You had not come in yet that day. No one could tell me when you would arrive.

On March 10, I attended your town hall meeting that you scheduled. You did not show up.

I tweeted you on several occasions:

March 8

and March 11

and March 13

and March 19. Twice.

I have never received any response from you whatsoever. I do not know of anyone in the district that has, and I won’t even get into how many times you’ve been contacted by others I have talked to. My efforts to reach you pale in comparison to the efforts of another nearby family who has a far more dire situation.

I guess you can afford to treat your constituents that way when you are unopposed.

But someday you won’t be, and I can’t wait. I will be there and I will be vocal.

Sincerely,

One of your many irrelevant constituents

Judson_Hill

Update:

I finally sorta kinda made contact with Judson two years after I posted this letter. Apparently, the key to getting his attention is his wife. Rep. Allen Peake had posted on his public page about his disappointment in the failure of the 2016 Georgia legislature to expand medical cannabis. Senator Hill’s wife commented and the following thread resulted on that post.

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I refrained from pointing out that the family he spent time with was the one that received the most press this year.

But this is how he handles “problem” constituents.

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Medical Cannabis and Political Games

Guest post by Mixed Up Daddy

For those of you that have wondered, yes there is a Mixed Up Daddy that walks the path of life with Mixed Up Mommy.  Probably more astonishing to some (including my family and close friends), I even can write!  Although let me start by saying I don’t write nearly as well as my wife.

Also, before I get into the true reason of this post, let me just say how proud of my wife I am, not only for writing this blog and educating so many on TSC and our journey through it, but also for being an incredible wife and best friend to me, and of course the best mom ever to Connor (no offense to the other moms out there!).  I also want to thank the little man himself, Connor.  He is such an inspiration to me, and I only wish I could have a little bit of the strength and courage he shows every day.

Now on to the reason for my first foray into blogging — a certain state representative here in Georgia.  As I am sure you are all aware from reading Becky’s blog, there has been a push in 2014 to legalize medical cannabis oil in Georgia — oil that could potentially not only help with the quality of life for so many like Connor, but could potentially be lifesaving.  It goes without saying how wonderful it is to have State Representative Allen Peake of District 141 who was willing to champion this cause for so many on our side.  He did this knowing it was going to be a tough fight and one that could potentially end his political career.  It is refreshing having politicians who, even though they may lose their political career, are still willing to take on the hard issues because it is the right thing to do!  I applaud you sir!!!  I only wish we had more like you at every level of government.

But that isn’t the representative I came to write about.  I also didn’t come to write about my State Senator who, although he is in the state senate to represent myself and the rest of his constituents, never returns emails, voicemails, Twitter messages, stands you up for appointments, and doesn’t even show up for his own scheduled town hall meeting (and let me add this is not just my experience, but dozens of his constituents’ experiences).  Nor am I here to write about how wrong it is that our government (both at the federal and state levels) take off every other year from tackling the hard issues because “it is an election year”.  Again, there are some great politicians out there that don’t do this, but I am sick of hearing this. You are elected to represent us, each year and every year.  I am also not here to tackle the comment made on the floor of the Georgia House of Representatives during the debate on HB885 by a freshman politician that when he took office he was told by other politicians that freshmen congressmen and congresswomen should be seen and not heard.  Since when do those who elected a new member to represent them suddenly not have a voice?  To me this is nothing more than bullying of politicians by other politicians. Thankfully the above referenced representative did not listen to those politicians, but instead gave a great speech and represented those from his district. On a side note, don’t get me started on the all too common practice in politics of “the more you donate, the more you matter and get access.”  Maybe that is how I can get access to my state senator?

Okay, so maybe I got to a few items, just not in the detail I could have.

No, I am here to talk about, and give my opinion — no one else’s — on Georgia State Representative Sharon Cooper of District 43.  I did not know who Sharon Cooper was before this process as I do not live in her district and did not get involved in state politics. But after this process, oh wow!  Now I readily admit I am biased when it comes to the topic of cannabis oil, but my issue with Sharon Cooper isn’t so much on this topic, but the way she has conducted herself during this process, and I can only assume, how she conducts herself in general down at the Gold Dome (the Capital in Georgia is referred to as the Gold Dome).  I also will say that she voted for this bill twice — once in committee and once in the full House vote. But looks can be deceiving.  In my humble opinion she has actually been trying to kill the bill behind the scenes.  I will get to that in a moment.  Some though will say, “Why would she vote for the bill if she didn’t want it passed in reality?” Well that is where I question how she does things.  Based on parents who were in the House during the vote, she was one of the last to vote. Again it is just my opinion, but my guess is that she was seeing how the vote was going, and in “old school politician” mode, chose to vote for it as it isn’t easy to be a “no” vote when the vote is 171-4, but it is easy to hide as a “no” vote if the vote were say 104-71. (I know old school dirty politics, I was born and raised in Chicago, where that was invented).  No, an “old school politician” would vote for it (knowing that is what the public would see), and then behind the “closed doors” of the capitol try to kill the bill (luckily the doors of the capitol of Georgia are not as “closed” as she thinks).  My issue here is that she has a responsibility to her constituents to show them how she truly votes on the issues, not resort to the all too common politics of today of “I will do whatever I need to do to get reelected”.  I have no problem with my elected officials voting contrary to my opinion on issues, as there is no way we would see eye to eye on every issue.  We should not have to ask that they vote accurately though so we can actually make an informed decision during elections.  We deserve that much!

Now you may ask, “How was she trying to kill the bill?”  Behind the scenes at the Gold Dome she was passing out a flyer on the “Truths” (my wording) of HB885, yet there were several facts that were wrong on it.  I am not sure if she just got the facts wrong and didn’t do the research, or if she did this on purpose, but either way that is unconscionable, and although it is common in politics, has no place.  Let’s also not forget that her position on some items is ever changing.  Take Epidiolex (a pharmaceutical cannabis product that is currently going through FDA trials and shows some great promise) for example.  At her committee meeting there was testimony by a woman — a family values advocate, not a doctor  –who said Epidiolex could be here in Georgia in 30 days, yet there was also testimony by a respected neurologist (Connor’s doctor, and many of the other children that could benefit from cannabis oil) who said he was in the process of getting DEA approval to run an Epidiolex trail, but it was a long and arduous process.  So who does she back during the meeting? The non-doctor testimony — never mind the fact that it was a lie.  She would correct that in later speeches and comments though.  She could have also found out more about how it is such a long process by watching the show Weed 2 that recently aired on CNN and was done by Dr. Sanjay Gupta.  Of course this is the same congresswoman who called into question Dr. Gupta’s credibility during her committee meeting.  Never mind Dr. Gupta is a well respected neurosurgeon, assistant professor, and journalist.  She also cut off more than one parent during their testimony, including one that she would later reference in her speech on the House floor regarding medical cannabis, although twisting and misrepresenting his story to fit her ways.

Representative Cooper’s big idea on the subject is that we have an alternative FDA medicine — Epidiolex — at our disposal.  Unfortunately that medicine is not readily available and we have no idea when it will be (most likely years based on other FDA timelines).  Currently it is only in trials, very limited trials (we are talking 125 people, and based on trials that are trying to get up and running, at most maybe 2000 people, but probably less, in the future).  She also has said that Children’s Hospital of Atlanta has told her they are open to do studies on Epidiolex, yet when contacted, CHOA said they have no interest in doing a study on Epidiolex at this time. I have no idea why the parents are getting different information than Representative Cooper, but we certainly aren’t being told what she says she’s hearing (maybe “old school politics” again).  What do these parents and adults do in the meantime?  Also, let me point out that most patients have exhausted all available FDA-approved meds that are out there for their conditions.  Let me also mention that although I am sure there are some incredible people working for the FDA, let’s not forget that the top levels at the FDA are political appointees, and that big pharma is an incredibly powerful lobby and big contributors to political campaigns.  Let’s also not forget the side effects that come with the FDA-approved meds that are taken every day — possible vision damage, kidney failure and liver damage to name just a few.  Or that there have been FDA-approved drugs that have then been recalled.

I am digressing though. There are some incredible parents we have met along this journey that are a lot better at giving examples of her lies, and if they cannot get them published in the Atlanta paper, I am sure my wife will give you a forum to get your message out.  Since the Atlanta paper allowed an editorial by Sharon Cooper though, I certainly hope they give “us” a chance to get the truth out there.  Again, this is about her shady politics, though.  This is what the general public has grown sick of in America.  We expect our politicians to act in a better manner.  I only wish I lived in her district to run against her.  In Georgia though, we are sort of set-up where the common man can’t run.  We only pay our politicians less than $18,000 a year (no, I am in no way advocating for higher pay), so unfortunately unless you are a business owner, or independently wealthy, it is almost impossible to run as you can’t raise a family on that pay.  As great as my company is, and they have been incredible throughout our whole journey with TSC, I am pretty sure they are not going to let me take the first three months of the year off.  And how I would love to run against our state senator so that everyone in our district could be heard and represented.  I deserve to be heard and represented; we all deserve to be heard and represented!

Sharon Cooper was passing out the original in black to members of Congress. The red print reflects changes made by two of the parents so it could be passed out by HB885 supporters to set the record straight.
Sharon Cooper was passing out the original in black to members of Congress. The red print reflects changes made by two of the parents so it could be passed out by HB885 supporters to set the record straight.

And another medical marijuana refugee is born…

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Janea and Haleigh left for Colorado yesterday. Haleigh is the little girl for whom HB885 is named “Haleigh’s Hope Act.” The awesome Rep. Allen Peake met her and immediately began his crash course into the world of medical cannabis and CBD oil, pushing this Georgia bill with everything in him.  But Haleigh’s declining health means she can’t wait. Her father must stay behind in Georgia because of his job.

HB885 has passed the senate committee but with major changes. Cultivation is out. Basically, it provides legal protection to a person caught with CBD oil. It does not help us obtain it. This was always a hurdle even with cultivation (there were different issues surrounding that). You’d have to get it in a legal state and get here without being caught. Frankly, places like Realm of Caring are not going to sell it to you knowing you plan to cross state lines against federal law because that puts them in danger of being shut down by the DEA. It’s important to understand that this bill, even if passed on the senate floor, signed by the governor and made law, would not allow everyone to run out and get it for their kids. It does prepare our state, however, for a change at the federal level. If the feds reclassify it with the DEA — as they need to — we are ready to go. And hopefully, passing this in such a conservative state will add more pressure to the federal government to get off their butts and help people.

Another twist is that a separate bill is now attached to HB885. The chair of the senate committee, Renee Unterman, has been trying to pass a bill for five years (Ava’s Law) mandating that insurance companies cover treatment for autism (Georgia is one of a minority of states that don’t require autism to be covered). A compromise bill that increases benefits up to age 6 is now part of a package with HB885 called the Kid Care Act. The autism bill has also been tacked onto HB943, which would prevent insurance discrimination over certain types of cancer treatment. The reason is that the autism bill alone would have to go through subcommittee in the House, and thus far, they haven’t been willing to hear it. By tacking it onto bills that have already passed the House, it bypasses the subcommittee when it goes back to the House for approval for the change.

Now the bill must go through the Senate Rules Committee and then go to the Senate floor for a vote. Then it goes back to the House for approval. Last day of session is March 20. Nothing like going down to the wire! Once again, if you haven’t e-mailed your Georgia state senator yet to support HB885, you can find out who yours is at openstates.org.

Also of note are two op-eds in the AJC today. Eli Hogan shares his experience living with Crohn’s Disease and it is a great read. It is followed by a  counter-point from Rep. Sharon Cooper. As you read it, please keep in mind that she voted to pass HB885 twice. First out of committee, then on the floor. I would also urge you to read some of the excellent comments from parents below the essays.

If you missed Sanjay Gupta’s follow up to last year’s special Weed, you can find it here. The original is here. Anyone who cannot invest the 45 minutes it takes to watch at least one of these has no right to question the people who are fighting for these changes.

Hitting Capitol Hill in Washington, D.C.

So much excitement over the last couple weeks. Where to begin…

HB885 passed the House vote 171 to 4. It now awaits a hearing in the Senate. If you haven’t yet contacted your Georgia state senator, please do so right away. If you aren’t sure who it is, check here.

Chris and I flew up to Washington, D.C. last week to meet with our representatives about the continuation of funding for the Tuberous Sclerosis Complex Research Program (TSCRP) which is part of the Congressionally Directed Medical Research Program (CDMRP) in the Department of Defense (DOD). Yes, I am drowning in a sea of acronyms. Quick quiz: how many of these acronyms do you know?

AML, TSC, SEGA, LAM, SEN, CBD, CW, FDA, THC, DEA, RoC, VNS, CPS, TC, GW, IND, LGS, HIPP, KB, CHOA, PT, SLP, MT-BC, MAD

(Answers: angiomyolipoma, tuberous sclerosis complex, subependymal giant cell astrocytoma, lymphangioleiomyomatosis, subependymal nodules, cannabidiol, Charlotte’s Webb, Food and Drug Administration, Tetrahydrocannabinol, Drug Enforcement Agency, Realm of Caring, vagus nerve stimulator, complex-partial seizures, tonic-clonics, this is the name of a pharma company (I actually have no idea what GW stands for), investigational new drug, lennox-gastaut syndrome, Health Insurance Premium Payment Program, Katie Beckett, Children’s Healthcare of Atlanta, physical therapy, speech-language pathologist, music therapist-board certified, modified Atkins diet).

That fact that I know those in no way makes me smart. It just means I can do even less math than before because I’ve had to drop everything number-related dating back to second grade to make room for it all. To be honest, that only equates to a couple of years. It was all downhill from fourth. Also, don’t ask me to pronounce most of them.

Now back to DC…(see how I did that?) Volunteers flew in from all over the country and we swarmed the Hill in our sexy blue jackets. There aren’t words for how excited I was to discover these had thumb holes. I love thumb holes.

Fellow TSC mom Reiko and my hubby Chris helped me hit all the Georgia congressional offices.
Fellow TSC mom Reiko and my hubby Chris helped me hit all the Georgia congressional offices.

We secured promises of support from the offices of John Lewis, Hank Johnson and David Scott. The meeting with David Scott was my favorite as I had no expectation that we’d be promised support on the spot like that, and the staff member we met with immediately began asking questions about what was going on back in Georgia with HB885 when we mentioned TSC’s link to seizures. It was awesome to know they were talking up there. Don’t worry, fearless trainers from the previous evening’s dinner, Reiko got us right back on topic 🙂

Chris and I even got some time the first day to explore so we went to Ford’s Theatre and the house where Lincoln died. His blood-stained pillow and the tiny gun that killed him are on display. The balcony is preserved as it was, and I was actually surprised to learn that it is a working theater. We did some more walking around including a photo op at the White House where our phones died simultaneously only letting us each get one shot. I don’t want one more stupid iPhone model coming out until they can make a battery that lasts more than five minutes.

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The last night we were there was the Volunteer Recognition Dinner. Four people were awarded a Franny, the volunteer of the year award for 2013. Chris had broken down and told me he nominated me a couple weeks prior — so very sweet — but that did nothing for my slow processing as one of the winners was described as having a son Connor’s age, a blog with the same amount of hits and followers as mine and involved in similar activities. I thought, man, who is this person leading such a similar life? Oh it was ME! ME!

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Then, like a jerk, I forgot to thank Chris a la Hilary Swank and Sean Penn who ended up divorced after their Oscar acceptance speech snubs of their significant others. He swears it doesn’t matter, but just in case: THANK YOU, MY AWESOME HUSBAND!

All the winners.

Well, if you haven’t read it yet, check out my post from Sunday here. It is now my most read and shared post of all time. I’m thrilled to help get the message out on the potential benefits of medical cannabis. Though I can’t help but wonder why you all aren’t as intrigued when I blog about my repetitive dreams of my teeth falling out or weight loss powder shakes…

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With Chris Hawkey.
With Chris Hawkey.
With CEO and President of the TS Alliance Kari Rosbeck.
With CEO and President of the TS Alliance Kari Rosbeck.
Grandma and Grandpa took Connor to aquatic therapy while we were gone.
Grandma and Grandpa took Connor to aquatic therapy while we were gone. We did it! Four whole nights away! Guess we’re ready for the islands…

Please check out my latest post at Mommy Hot Spot.