Tag Archives: politics

Governor Deal plans to block medical cannabis expansion.

I’m experiencing a serious feeling of deja vu. Except last year Governor Nathan Deal waited until after Christmas to drop the bomb on the sick and suffering of Georgia, along with their families. Happy holidays, citizens. You don’t matter.

Let’s do a brief recap. In early 2014, a parent lobby rose up, with the help of Rep. Allen Peake of Macon, to try and pass HB 885/Haleigh’s Hope Act to help people with epilepsy access cannabis oil. It was a very limited law, but by the time it hit the floor on the final day of session, it had been whittled down to nothing but immunity for possession of the oil. Political games were played, namely by Sen. Renee Unterman of Buford and Lt. Gov. Casey Cagle (who has his sights set on the Governor’s seat), and the bill died, much to the devastation of the families. As the clock ticked toward midnight, several families ran to Deal’s office to beg him to intervene, to demand that the bill get a vote. He wouldn’t come out of his office. More families moved to Colorado in desperation. And three children I knew through this effort would pass away as the fight continued.

Over the course of the year, Peake led a commission to explore the idea further and how to make it work in Georgia. They concluded in December of 2014. Everyone was excited at the prospect of a bill that would include more conditions and allow a higher ratio of THC to CBD  (necessary for many people for whom CBD alone doesn’t cut it). It was also supposed to allow cultivation and growth in the state of Georgia as bringing it over state lines is federally illegal. Before the session even started, Deal made it clear growing was off the table. It was another devastating blow, however, HB 1 did pass with several eligible conditions. Residents could apply for a card that allowed them to possess cannabis oil with up to 5 percent THC.

Let me quickly say, I am for full medical marijuana. Legislators should not be able to dictate what conditions or stages of disease are eligible. They are NOT doctors, except in rare instances. But this is the sad hand we are dealt in Georgia. Too many elected officials that think it is their job to parent rather than represent the will of the people, who are largely in favor of medical cannabis. The goal for 2016 was to hopefully expand conditions and allow growing so that federal law doesn’t have to be broken to obtain it.

The signing of HB1 in 2015 was quite the production with the Governor’s office. He even shed (crocodile) tears as he signed the bill to help the families his staff strategically placed around him for the camera op. It was a performance worthy of an Academy Award.

Over the course of the past year, taxpayers have sponsored another committee to explore options for growing in Georgia. They have not completed their work or presented the final findings to Deal, however, yesterday he came out and said he will not support growing in 2016 either, even though the whole point of the committee he appointed was to make that happen.

He says law enforcement doesn’t want it. Well, last time I checked, that isn’t the branch of government that writes the laws.

He also says that the 300 people who have registered aren’t enough to be worth the cost of the program. Hear that, fellow card holders? Our loved ones aren’t worth it. He fails to recognize that many people can’t register because the restricted legislation doesn’t include their conditions, or if it does, they have to be end stage (yeah, you aren’t dying enough yet), and many need more THC than is allowed by the current law. Several patients are also encountering the issue of their doctor refusing to sign off simply because they oppose the idea or lack education about how it can benefit various conditions.

I find it funny that he considers the cost/benefit ratio not good enough to have in-state grow, but he supported pharmaceutical trials that cost the state an extraordinary amount of money, and have taken forever to benefit anyone at all.

He never intended to listen to either committee. But he was happy to waste your tax money putting on a show of fake compassion.

There are two things I really hate about epilepsy. The first is obviously what it has done and continues to do to my child, even though he has shown extraordinary improvement on CBD oil.

The second is how it has left me feeling about my state and my country. Getting involved in corrupt politics has been so incredibly disheartening. I was happier in the dark, but there is no going back. I just hope there is a light at the end of the tunnel in the form of a majority that can override Deal’s veto. But that road looks a lot like a Georgia road in an episode of The Walking Dead. We need everyone to speak up. Please call and email your state senators, representatives and, of course, the governor. Let him know you are tired of him ignoring the will of the people.

This site will help you find out who your state officials are:

http://openstates.org/find_your_legislator/

Governor Deal, this is just one the many faces you are hurting. Look at him. He is a person. He is a Georgia resident. He is loved. Now do your job.

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For more on what happened last year, read this.

 

 

 

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Thanks, Sen. Renee Unterman and Lt. Gov. Casey Cagle!

My heart is going a mile a minute and I am trying not to go into a rage. The one thing that made it okay that HB 885 didn’t pass in its final form last session was that by then it had been stripped to an immunity bill. Not a lot of good when you can’t obtain it in your state. But Realm of Caring has decided not to move forward to with their plans to ship Charlotte’s Web UNLESS the state has already passed AT LEAST an immunity bill due to the closer scrutiny they have endured since rolling out this plan. GEORGIA FAMILIES THAT THOUGHT THEY WERE GOING TO BE ABLE TO GET IT SHIPPED AS EARLY AS NEXT MONTH NOW CAN’T. This is thanks to the despicable actions of SENATOR RENEE UNTERMAN of Buford (who is on the current medical cannabis committee and typically appears to be asleep in meetings–IF she bothers to stay for the whole thing) and LT. GOV. CASEY CAGLE who thought it would be cute to smirk at the grieving families as the session closed without it being allowed to go to a vote at his discretion. Please share the word of what they have done. Georgia families now have to wait for the next session to get a law that will allow them to receive it, when every state around us already can.

From RoC:

“This change will not impact availability for those of you who live in states with clearly defined statutes that allow individuals to possess CBD or low THC, regardless of the specific means by which these products are acquired. For everyone else: we will be seeking clarification from the appropriate agencies in all 50 states in order to determine the legal accessibility and risks of possession of CBD products. To be clear, as soon as we have confirmation from your state authorities that you will be exempt from prosecution, we will ship to you.”

So let them know how you feel:

Sen. Renee Unterman:

Renee.Unterman@senate.ga.gov

121-H State Capitol
Atlanta, GA 30334
Phone: (404) 463-1368
Fax: (404) 651-6767

Lt. Gov. Casey Cagle

e-mail here.

240 State Capitol
Atlanta, GA 30334
Phone: (404) 656-5030
Fax: (404) 656-6739

 

Rep. John Fleming of Louisiana is a perfect example of what’s wrong in D.C.

Unknown-1Representative John Fleming of the fourth district in Louisiana is extremely opposed to medical cannabis. While he does see a place for pharmaceutical versions such as GW Pharma’s Epidiolex, marijuana scare tactics appear to be a major part of his agenda and he has no interest in helping desperate parents save their seizing kids. He has no problem with dying children waiting while researchers fight through the tangle of red tape that is marijuana research and the lengthy process that is FDA clinical trials. Oh, those trials have been fast tracked and we can get into studies (sound familiar, Rep. Sharon Cooper?). Never mind that most of us can’t get into those studies. Connor doesn’t qualify with TSC, and even parents who have children with the requisite syndromes are unable to find openings. FDA fast tracking just means they shave some years off the years it will still take to approve it (Connor’s most effective med, vigabatrin, had its first clinical trials in 1979. It was approved in the States in 2009, years after other countries made it available).

Rep. Fleming is very, very worried about recreational use. Our children are nothing but Trojan Horses (his words) used by those who want full legalization for recreational purposes. He is so worried about recreational use and the fear that someone might find a way to use medical cannabis for fun, that he is willing to sacrifice the lives of sick and dying children. He is not interested in hearing our stories of our children that need it or those that are already benefitting from high CBD strains and THCA in legal states. He voted against the recent Rohrbacher amendment to prevent funding the DOJ for raiding state medical marijuana programs. In fact, if you try to tell him about your child on his Facebook page, he will delete it. He can’t have the public know who he’s hurting with his over-the-top antics.

IMG_0964It’s his Facebook page that brought him to my attention, as well as to the attention of some other parents dealing with seizure disorders. He had posted about a speech he gave on the dangers of marijuana so several of us posted on the thread. Many of our comments got deleted. Several of us are blocked from commenting further. I will say, in the interest of full disclosure, that perhaps I implied I had doubts about his abilities as a medical doctor since I came across an article about how he blocked doctors from being able to discuss the medical marijuana option with veterans because he didn’t want them exposed to an addictive, harmful substance. Yet you never see him express any concerns about the highly addictive, dangerous nature of many pharmaceuticals. Prescription pain pills are some of the most highly abused drugs, but that doesn’t concern him. But I don’t think I got deleted and banned because I might have come off as insulting (there was no swearing or name calling). I think I got deleted because I talked about my kid and about how dangerous one of his prescriptions is. (And to be clear, I am not part of the anti-pharmaceutical movement, nor do I believe that marijuana is a cure for everything or that it will work for everyone. I think pharmaceuticals have their place alongside options like cannabis. I just ask that my zip code not determine my access).

I’m not the only one. Several people who talked about their kids got deleted. Interestingly, he started debating with one of the parents–also a doctor –and did not delete or block him. However, he DID delete a link to a YouTube video that this father had made about his daughter and medical cannabis to educate the public. Interesting. Rep. Fleming is so passionate about Facebook page maintenance that he even stayed up until midnight on a Friday to edit, delete, and condescend. Yes, condescend. You may wonder why I find this particular representative so interesting when he is obviously not the only one who opposes helping our kids. Well, though I was blocked, I still found myself quite fascinated poring through his page. It became clear that his page serves no purpose but to rile people up and be divisive. It’s not even about whether I agree with his views or not; it’s that he clearly uses it as a tool of stirring discontent. Don’t get me wrong. I pretty much expect to see Obama-slamming on most GOP pages, just as there is some over-the-top Obama adoration on the pages of many democrats. But I looked over a few other pages from other parties and none gave me the same disturbing hateful feel that I got from his. I expect these pages to have opinions and criticisms. But what I found from the other ones I looked at is that I could also find positive comments about something they were involved with, or that I didn’t have to scroll far to get an idea of legislation they were involved with. Fleming, on the other hand, just seems to bitch and moan. I know his opinions, but very little of what he’s doing about it. Those posts are good and buried. I’m in no way saying he is the only one who behaves like this, but there are just too many people in Congress for me to look at all the pages. I looked at four other Republicans and four Democrats just to see if this is the norm, but saw nothing like this. All the pages are going to have rude comments from the public…the difference is that most of these other pages don’t seem as heavily moderated in that area. So when you make a point to delete and moderate heavily, you are implicitly showing support for what you leave in view.

What I found especially interesting is the way he chooses to interact as an elected official. I’m sorry, but our representatives should set an example of decorum. You are going to have rude comments on social media, and there is a line people can cross where you are well within your rights to delete. But he’s deleting to twist the story and those that get to stay, but disagree with him, get a condescending attitude the likes of which I’ve never seen.

Here are some screen shots from the medical cannabis discussion with parent of sick children. He keeps talking about legalization, though many commenters are focused on rescheduling. He’s also completely in the dark it would seem about how damaging the schedule 1 status of marijuana is on research. But he won’t be told otherwise!

This flat out lie:

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And excerpts from last weekend’s marijuana discussion in which it was necessary to talk down to and insult parents desperate to save their kids. I’d tell you to check out his page to get the full conversation, but alas he is forever editing and deleting. Who know what’s missing and edited by now.

Excerpts with one dad.

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Excerpts with another dad.

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Please keep up with developments? Really? By the way this dad is the doctor I mentioned earlier. The other dad’s response to Fleming’s endless egocentrism.

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Once again, Dr. Fleming, learn the difference between rescheduling and legalization.

And the one I take very personally because this mom has a child battling the same disorder. (Update: Since I first posted this, Rep. Fleming has removed all the comments by this mother, yet left his own responses).

IMG_1133 IMG_1134 IMG_1135 IMG_1136 IMG_1137 IMG_1138 IMG_1139 IMG_1140 IMG_1141 IMG_1142I simply must interject here…They will just GIVE US the medication if our kid is going to die? Just like that. Anybody remember Josh Hardy who made the news last March? He is seven. The pharmaceutical company denied him compassionate use. They didn’t reverse their stance until the public pressure became too overwhelming. Rep. Fleming truly lives in his own world–a world where pharmaceutical companies give people drugs when we say “pretty please with sugar on top.”
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Not one ounce of compassion in that entire thread.

For the love of God, why can this man not make the distinction between legalization and rescheduling?

Yeah, pretty sure we explained that (in now deleted comments) that this wasn’t an option for everybody and some kids will be dead before Epidiolex goes to market. Not to mention, Epidiolex is one particular formulation. It’s not necessarily the same as what some of the kids are responding to. It may work for some, but others will need whole plant medicine.

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Like I said, he loves to delete.

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So some of the parents got to stay and debate with him. I guess those of us that were deleted didn’t have anything constructive to say. So in the interest of helping others, I’m going to share some screenshots I took from other threads on different topics so that you will know what Rep. Fleming considers positive contributions to the discussion should you wish to engage without being banned. And please know that in an older thread, he has stated that cursing and name calling won’t be tolerated. But I guess that’s only if it’s about him.

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Though some who don’t know me may assume I’m targeting him because of his party, that is absolutely not the case. If he had come to my attention as a Democrat behaving in this manner–I’d say the same (I float somewhere in the middle annoyed by extremes on both ends). He’s a perfect example of what we don’t need in D.C. making decisions for people. Someone who makes it very clear that he can’t and won’t work with his colleagues unless they tow his line and won’t listen to the other side of the story. He’s there to represent his own interests. I actually found in Georgia that the bipartisan support for our kids was amazing.

But perhaps I’m being unfair. He does get his information from reputable sources.

john_fleming_screengrabPlus, Rep. Fleming has but this one request.

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Of course, don’t expect HIM to abide by it.

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He really can do it all. He gives grammar lessons.

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He’s a Biblical scholar.

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A civics professor.

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Hmmm…be a statesman…good point.
IMG_1081His response:

IMG_1082Historian.
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Economics professor.IMG_1078

He gets by with a little help from his friends.IMG_1077

I just wish he cared as much about the kids that have been born as he does the ones that are in utero.

Maybe it’s time Dr. Fleming goes home to Lousiana and focuses on his 36 Subway sandwich shops in North Louisiana.

We all have our beliefs and biases, and hey, I don’t necessarily like all the people being referenced here either, but if this is how you think a United States representative should conduct himself, you need to reassess.

 

Please check out this YouTube response some parents put together for him.

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.

A 15-month-old dies of red tape.

“I came here today with the hope that this administration would do everything possible, make every resource available—there is no reason this disease cannot be conquered. We do not need in fighting, this is not a political issue. This is a health issue. This is not a gay issue. This is a human issue. And I do not intend to be defeated by it. I came here today in the hope that my epitaph would not read that I died of red tape.”  -Roger Gail Lyon to Congress in 1984, shortly before his death from AIDS.

“It’s a simple issue. Please don’t let my daughter die, Governor.” Father of Vivian who has Dravet syndrome, Brian Wilson, to Gov. Chris Christie

I recently became a member of a Facebook group about the use of pediatric cannabis, consisting of parents who are using medical marijuana to treat their children’s serious illnesses, as well as parents who are seeking to do so. As we live in Georgia, I fear we will be at the end of the list of states to make it available, but I’m wanting to keep an eye on things as you probably saw in my previous post. I simply don’t understand why people are so afraid of MMJ, but it’s okay that my son takes Onfi which carries this potential side effect.

Two members of the group have a daughter with Dravet Syndrome, a severe form of epilepsy. If you watched Dr. Sanjay Gupta’s special Weed, which featured Charlotte, the little girl in Colorado who had her life transformed by MMJ, you have seen what Dravet can do to a person. This family lives in New Jersey, a legal state, but one with some of the largest restrictions since Gov. Chris Christie shakes in fear that he is treading a slippery slope in which — gasp! — adults might get high just for fun. This family had just completed jumping through the hoops, completing paperwork and sending the $200 fee to the state last week. Her marijuana application is pending.

On November 27th Sabina Rose suffered a 25-hour seizure that caused brain damage and swelling. She died December 2.

But, hey, at least those darn adults can’t get high.

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A quick and easy favor to ask…

April 15 is approaching and that is the deadline for your representative to sign the Dear Colleague letter to fund the Tuberous Sclerosis Complex Research Program. And that’s pretty much all you have to say…that as one of their constituents, you want them to sign ASAP.  If you suffer from, or know someone who suffers from it, you can personalize it. If your only experience is through this blog, please feel free to share about Connor. This is my most recent follow up to my representative. It was quick and easy to send:

Dear Representative Price,
I’m writing to urge you to sign the Dear Colleague letter to fund the Tuberous Sclerosis Complex Research Program. The deadline is April 15. This research doesn’t just help those afflicted with TSC. It also helps those with traumatic brain injury (which is why this is funded by the DoD), epilepsy, autism, many cancers, diabetes etc. In February, I met with you, along with two other constituents, Reiko Donato and Wendi Scheck, to urge you to sign this. We also shared letters and personal stories with you from several other constituents who are also dealing with this genetic disorder that causes benign tumors to grow on the organs. We are counting on you to represent our needs in Washington. We are eagerly watching the growing list of signers, hoping to see your name appear.

Thank you,

Not sure who your rep is? Look here. Then just go to their site to get their e-mail!

Thank you for your support!Image