Monday, April 28, 2014

5,000+


Over the next few days, more than 5,000 letters and cards, backing Senate Bill 1182, the Compassionate Use of Medical Cannabis Act, will be arriving in Governor Corbett's office.

The goal is to bring to the Governor’s attention the will of people who have no need for medical marijuana, yet who support the measure.

In March, Quinnipiac University released the results of a poll showing that 85% of registered voters, both Republican and Democrat, support the legalization of medical marijuana.






Have the Courage


Have the courage to give us access to medical cannibis 

by Matt Sharrer



I am the father of a 9-year-old girl who is not living the life most girls her age are living and that breaks my heart. It breaks my heart every time Annie, diagnosed with intractable epilepsy, has a seizure - often 10-20 smaller episodes a day with a more serious grand mal seizure every week. These debilitating seizures are a constant obstacle to her well-being and often interfere with her ability to learn and grow. But still, my wife and I – and all the people in Annie's corner – do the best we can to try to gain control of her condition.

In her young life Annie has been given at least 12 different anti-epileptic medications to try to gain control of most of her seizures. Though these medicines have been approved by the FDA, they have extreme side effects scary for little bodies, such as excessive weight loss, drowsiness, hallucinations, addiction, organ damage and loss of balance and coordination. But the worst side effect for Annie was pancreatitis, an extremely painful and dangerous inflammation of the pancreas. The only treatment is to be hospitalized without food or water for several days until the pancreas settles down.

While we've learned to manage the smaller seizures, it's the grand mal seizure that controls our lives, for we never know when one will happen – and because of that, it's nearly impossible for Annie or our family to live our lives freely. If she's at school when it happens, will she be treated swiftly enough? Will she require a trip to the ER? What if her mom and I can't be reached the exact precise moment we need to be? As parents, we live with this uncertainty daily, and it's scary. We are on high alert at all times. We have a monitor by our bedside to listen for any sound Annie may make throughout the night that could signal the onset of a seizure.

To compensate for so many unknowns at school, Annie doesn't participate in sports, after school activities and many other social functions for the most part because it is the safest way for her to live right now. The irony is, however, that the powerful anti-epileptic drugs Annie is on make her feel sick and tired most of the time, anyway, so even if she wanted to participate in activities, she most likely wouldn't be well enough to focus and have fun. Annie's little brother loves her very much, but sadly they will be challenged to do “normal” things as siblings.
By now you've likely heard stories of parents in Pennsylvania and other states moving their families to Colorado so their sick children can have access to medical cannabis - specifically, an edible oil from the cannabis plant proven to reduce or eliminate epileptic seizures in many children. Well, I don't want to move my family to Colorado. My family is here. My family business and family farm are here. However, we may soon succumb to being medical refugees in another state. It is very sad and makes me angry that we may have to explore this option all because Pennsylvania is not moving fast enough to save its kids.

That's why I implore Sen. Richard Alloway to co-sponsor Senate Bill 1182 – The Compassionate Use of Medical Cannabis Act - that would allow doctors to recommend various forms of medical cannabis to sick people who need it. Annie deserves access to the best medicine and the best medical treatment possible, regardless of her residence. Do we really want Pennsylvania's new state motto to be about its subpar access to medicine and quality of life? I can't believe that's what Sen. Alloway wants, or anyone, for that matter.

In fact, it's the opposite of what most people want. In a recent poll by Quinnipiac University, 85 percent of Pennsylvania voters polled said they favored medical cannabis. Every demographic group surveyed – age, gender and political party – said it supported legalization for medical use.

If the majority of voting Pennsylvanians support this measure and have compassion for the sick children and adults who need access to medical cannabis, why can't the majority of our legislators get on board and get this moving?
I'm tired of hearing from Annie's doctors that she's run out of options when I know another viable option exists – just not here in Pennsylvania.

But we can make it so. Sen. Alloway can make it so. Gov. Corbett can make it so.

Who will have the courage to make it so?



Tuesday, April 22, 2014

We Are the 85%!



video

On March 3rd, Quinnipiac University polled PA residents and found that 85% were in favor 
of the legalization of medical cannabis, 
with support at 78% or higher among every partisan, gender and age group. 
Even voters over 65 years old support medical cannabis 84-14%!

 We want to remind our legislators who they work for 
and that the 85% may look different from what they had envisioned.

Thank you to all of those who took the time to participate in this video.

Thank YOU for sharing this video!

WE ARE THE 85%!

If you are having a hard time viewing the video, please visit our YouTube Channel!




Tuesday, April 15, 2014

Bombard with a Card




Please join us in a mass mailing to Governor Corbett.

The goal is to send as many cards/letters from voters and supporters of SB1182 and medical cannabis as we can and to bring to the governor's attention that it is more than just moms of sick kids who want this...that there are supporters who have no immediate medical need as well and that these people vote!

For this to be a success, please adhere to the following guidelines:

1. With any correspondence, please be respectful with your message.
2. All letters must come only from Pennsylvania residents, preferably voting age, but the kiddos can write in support of their siblings/parents too.
3. One letter/card per person.
4. Must be HAND WRITTEN and snail mailed! I'm sure the post office will love us as they need the work!
5. DO NOT mail these cards/letters until SATURDAY APRIL 26! It's important that we all mail them the same day.
6. Keep it professional...please no marijuana leaf pictures or paraphernalia! Remember, this scares certain politicians and will only serve to reinforce any rediculous stereotypes they already have.
7. The card should be simple...non descript..or someone mentioned getting cards with your loved ones pictures on it...that's great! The personal touch is always good. Or you could just write it on plain stationery. It doesn't have to be fancy. The message is the most important thing!
8. The context of the message is basically to say that you are a voter and you support SB1182 and the compassionate use of medical cannabis and you ask that he do the same. If you are a Republican or Independent, please mention that as I'm sure he would like to hear more form his own party...And that if you voted for him before and are considering either voting for him again or not, please mention that too. Again...the goal is to let him know that there are many supporters of this bill and this is our democratic way of showing him that. You can add anything else you want to personalize it, just make sure that the gist of the context is in there.
9. Please get as many family, friends, neighbors, co-workers, church members, FB friends, etc. that you can to participate! The more letters the better!
10. Veterans......please get involved in a big way with this! You guys fought for this country and for these politicians! Let them know you need this help! They take what you say seriously..this is your chance!

And....finally......the address to send them to is:
Governor Tom Corbett
508 E-floor Main Capitol Building
Harrisburg , PA. 17120

THANK YOU! Can't wait to see how many are sent! Please post numbers and pictures of the cards, etc. Keep the momentum going!


Click here for more information!

Traci - A Pharmaceutical Prisoner



My name is Traci and I live in Franklin Township, York County. I am currently one of thousands of people living in PA who suffer with Fibromyalgia.

Fibromyalgia wasn’t recognized as a real condition until 1987 by the American Medical Association. FM, as it is currently called by patients, is a “diagnosis of uncertainty”! Doctor’s don’t know what causes it. There are no tests to confirm the diagnosis other than pressure point tests and some regular blood screening, however recently there has been a medical breakthrough with brain imagining. Most people have a regular functioning nervous system, but in patients like me, it is like the CNS (central nervous system) doesn’t connect.

My health issues involve:

1. Cranial nerve issues such as: loss of taste, speech disturbances (which is so severe it sounds like I have suffered a stroke), loss of balance, ear pressure, eye pain, ever-changing eyesight and visual disturbances, light sensitivity, blurred vision, disorientation, fainting, lightheadedness, nausea, carsickness, disorientation while riding in a car (made worse by simply passing an emergency vehicle with strobe lights on), dizziness, ears ringing/ buzzing, intolerance to loud sounds, hearing loss, inability to tolerate large crowds, one-sided facial pain, pain in your teeth, jaw pain and difficulty swallowing.

2. Cervical Spine issues such as: headaches/migraines, pain in the back of the head or skull, pain in the temples, “heavy” head, memory loss, neck pain/stiffness, muscle spasms, TMJ, nerve pain or numbness, finger pains, cold hands, swelling in both hands, pain in the wrist, arthritic fingers, weak grasp, tingling in any part of the upper extremities, leg/foot cramps, swollen ankles, etc. Sometimes even sheets touching my body brings great pain.

Due to FM, I am also plagued with suicidal feelings, depression, anxiety, panic attacks, nervousness, irritability, loss of time, memory loss, fogginess, forgetfulness, pain during or after exercise, increased pain when the weather changes, intolerance to heat, cold, and wind, skin rashes, hair loss, bladder pain, urinary incontinence, fullness of bladder, pain upon urination, etc.

I am currently on 11 prescription, however, at one time I was on a total of 40 prescriptions per day...literally leaving a bottle trail from the pharmacy to my home. Because of all of the meds I am on, my liver is not functioning correctly and I suffer from bile backflow through my kidneys as well as lung problems and AVN (bone death) of the long bones in both legs.

I am and have been a pharmaceutical prisoner for almost 20 years and I want this to stop. Medical cannabis helps treat every single symptom that is listed above. My body has enough to deal with let alone all of the pharmaceutical side-effects that are slowly killing me!

Saturday, April 12, 2014

Diana

Diana_thoughtheyears

My daughter Diana started having seizures and receiving anti-seizure meds at 9 days of age. These medications are only partially successful at stopping her seizures as she still continues to have them at the age of 16. These seizures can be severe and cause her significant injuries such as requiring staples in her head on two occasions and knocking out her front teeth on two other occasions.

Her medications have debilitating side effects such as cognitive delay, regression and even insomnia. Diana’s mental progress is that of a 2 to 4 year old and she still requires assistance in nearly everything she does.

Diana_smSince starting school in 2002, Diana has missed an average of 37 days of school per year. Her inability to sleep leaves her unable to go to school the following day or, according to the notes from her teachers, Diana is lethargic and unable to participate when she does attend.

MMJ has shown a remarkable ability to control seizures, not inhibit brain development and dramatically improve the quality of life for those with seizures without any of the many negative side effects of currently available medications. Help give Diana the chance for a much better life, happiness and to be all she can be.



Update March 2014

Since the announcement of SB 1182, Diana has had a bumpy road of seizures. She had a seizure that landed her from the dining room chair flat on to her face and then to the emergency room. This fall caused the inside of her lip to be severed and required it to be reattached. On the way to the hospital, I had to hope and pray that she did not chew off her lip and eat it before it could be reattached - what a horrible feeling!

During school hours they have had to give her emergency medication at least two times a month requiring me to go pick her up from school.

On the last weekend in February I had to have a friend come to help get Diana out of the tub because of her seizure clusters which made her fall asleep in the tub. Seizures in the tub are a particular concern because of her size and the damage that can occur with the very hard surfaces that surround her as well as the possibility of her getting mouthfuls of water and choking.

In mid March, Diana will again be having surgury to have her VNS replaced!

No child should have to suffer like this when there is the potential of so much improvement from the use of a relatively benign but much misunderstood and stigmatized herb.

-Louann Stanley

Andrew

Andrew is from Delaware County, PA and he is diagnosed with intractable epilepsy. Andrew was a typically developing little boy until the age of 4 1/2 years old when he contracted both meningitis and encephalitis. He was placed in a medically induced coma to try to stop the constant seizures as a result of the devastating viruses.

None of the medications work to stop the seizures and he is not a surgery candidate. Andrew is now 7 and epilepsy has altered his family in so many ways. Andrew deserves every chance to live a full life.
Andrew

UPDATE, 2014

Andrew's seizure count in February was higher than average. We had to stop trying to wean Keppra because of the increase. We thought Keppra didn't really help these past 3 years but now starting to wonder, it seems like such a guessing game. He will have a Neuro appointment sometime in April and will be participating in a 20 minute EEG to make sure we are not missing anything.

Tuesday, April 8, 2014

Daniel Shultz

Daniel (right), and older brother, Frederick, who passed away in June of 2011 at age 55 from complications of the same disease that Daniel has - Dystonia Musculorum Deformans

 

My name is Daniel Shultz and I am a lifelong resident of Pennsylvania. I support SB1182 and believe that patients should have access to cannabis plant material, tinctures, extracts and other preparations without limits to THC content, as described in the bill. I feel that this approach will allow for the largest number of patients to benefit from this God-given plant.

I inherited a form of a neuro-muscular disorder called Dystonia Musculorum Deformans, also called Torsion Dystonia. My oldest brother Fred also had this form of Dystonia and died a few years ago from its complications. The disorder, usually beginning in childhood or adolescence, is marked by muscular contractions that distort the spine, limbs, hips, and sometimes the cranial innervated muscles. The musculature is hypertonic when in action, hypotonic when at rest. Hereditary forms usually begin with involuntary posturing of the foot or hand or of the neck or trunk and may progress to produce contortions of the entire body.

Currently, there are no medications or treatments to prevent dystonia or slow its progression. There are several treatment options that can ease some of the symptoms of dystonia, including Botulinum injections, deep brain stimulation and medications. I've been prescribed and currently use artane (an antispasmodic) and tegretol (an anticonvulsant), which help to “maintain” my condition but not improve it. I've also had Botulinum injections, which provided no benefit. From the research I've done on cannabis related to how it helps people with dystonia, MS and other conditions that involve muscle tension and spasms, I believe it could help me more than my current treatment. My neurologist even stated that if cannabis would help me he would would not object to my use of it.

I am on Social Security disability and my activities are limited because of my disorder. I currently experience tremors and limited dexterity in my hands, pain, stiffness and tension in my neck muscles, my left leg is twisted outward which impacts my gate, muscle straining in my upper torso, and muscle spasms. My symptoms are getting worse with age. I believe that I should be able to have access to cannabis as a treatment option to help control my symptoms and improve my quality of life. The side effects of cannabis are more tolerable than those of the medications I'm now using, and it is essentially non-toxic, unlike my medications.

SB1182 needs to be passed as soon as possible to help me and countless other Pennsylvanians. 

As I get older my disease, or at least my symptoms, will get worse. Since writing the initial testimonial about a month ago my “nerves” have gotten worse, which more or less makes everything else worse. 

Senator Mike Folmer speaks in favor of Senate Bill 1182

http://pasen.wistia.com/medias/h4z26l89lg
Great video of Senator Mike Folmer speaking out in favor of SB1182! He is an incredible man fighting for the people of Pennsylvania!

Monday, April 7, 2014

Christopher K.

Christopher1



Christopher is a 17 year old boy with tuberous sclerosis. Since the age of 6 weeks old , he has had daily seizures. At one point he suffered from 80-100 seizures every day! At the age of 2 1/2, Chris had part of his right frontal lobe removed in an effort to control his seizures. This surgery, plus an out of country experimental medication, kept him controlled for a little while, but at puberty, the seizures returned.
Chris_sm
Over the years, to control his epilepsy, Chris has also taken 19 anti-convulsants with varying degrees of success and failure. Several of them caused severe side effects including rashes, increased behavior, psychosis,violent rages, increased seizure activity and he once was hospitalized for liver damage. Last year, Chris had a vagus nerve stimulator implanted in an effort to get further control of his seizures. Although this device has helped many people gain control of their epilepsy , it has failed to do so for Chris leaving him with the same 3-8 daily seizures he has been struggling with.
At this point in time, Chris’ only option is a newer drug that already has two FDA black box warnings on it for irreversible blindness and blue skin pigmentation. It could also cause psychosis, and urinary bladder retention. These side effects are what are keeping us from trying it!

UPDATE March, 2014

Despite increasing his current dosages of medication, Chris continues to have 3-5 seizures daily. Recently, Chris was briefly hospitalized for a more severe seizure that he had while on the bus on the way to school. He also developed temporary balance issues as a side effect of the increase in dosage. As we are our of viable medication options at this time, we are retrying an old medication and crossing our fingers in hopes that it will help while we wait for medical cannabis to be approved in Pennsylvania! Please contact your legislator and urge them to support SB1182 on behalf of Christopher and thousands of other patients that could be helped.

Thursday, April 3, 2014

Allie

Allie




Allie_sm
Allie is a year and a half and suffers from Dravet Syndrome. Her seizures started at 4 months of age, and she had weekly seizures averaging 25 minutes in length, the longest being an hour long, until she started the ketogenic diet at only 11 months old. She had a g-tube surgically placed at 7 months old due to medications taking away her appetite.

Her medications also cause her low muscle tone, causing her to be developmentally delayed. She has never slept a full night. She had some seizure freedom after starting the diet, but her seizures have started back up, and she has developed new ones. 

Last month she had 46 seizure. We are afraid that it was her Dravet Syndrome progressing. We are desperate for medical marijuana to be legalized before her seizures get even worse. 

She has 2 older sisters who love her dearly and hate seeing her suffer. They often go to school worrying cause their little sister had a seizure as they were getting ready for the bus and had to be rushed by ambulance. They often say “I was afraid she was going to die while I was at school.” 

If medical marijuana is not legalized soon, we may have to move to Colorado and in doing so leaving her oldest sister her in Pa. Her oldest sister is a half sister, and we have 50/50 custody. It is hard on the girls being away from each other for a week, I could not imagine months.
The picture above, the one of Allie on the floor, is of her seizing and her sister soothing her saying “Its ok Allie, I’m right here” and “Come on Allie I know you can pull through this.” That seizure lasted 20 minutes and the whole, time her sister was there.


UPDATE March, 2014

Since the hearing for SB1182, Allie has had 71 seizures, despite being on 3 benzodiazepines.  We have weaned her off of one completely and are in the process of weaning another.  These medications have absolutely no effect on her seizures.  The only thing the medications have done is hold her back.  

Since starting the weaning process, Allie is now able to walk short distances, up to 5 feet, the day of the hearing she couldn't stand and barely could sit up alone. 

This picture is after a complex partial seizure that lasted 10 minutes, after treating it very aggressively.  Thankfully, we got to stay home because roads were bad that day.

Wednesday, April 2, 2014

Brian

Hello my name is Brian and I live in Adams County, PA. I would like to tell you about my last 43 years of having Juvenile Ankylosing Spondylitis.

I was born with this disease. My childhood was not like most kids....mine was full of pain. I had no answers until I was 9 years old and was diagnosed with this disease. I only took anti-inflammatory meds, pain meds, muscle relaxers, and cannabis until about 2005. I then took a chance on a non FDA approved medicine for two years called Remicade. I continued this for a few more years and had to stop because my insurance wouldn’t pay the cost of $5800.00 every 6 weeks. I am now taking Humira, which is not working, and costs $2500.00 every two weeks. I experience upset stomach, panic disorder, depression, lung disease, restless leg syndrome, irritable bowel syndrome, diverticulitis, chronic headaches, iritis, and I am not able to walk much, if any, on a daily basis.

Even with all the meds I am on I don’t get much relief. The list of side effects from these meds go on for pages. Cannabis still has been the best medication I have taken yet. Below are a few studies I would like to share on arthritis and cannabis

The Big Debate: Medical Marijuana for Arthritis and Chronic Pain
Does Marijuana Help Arthritis?
Medical Cannabis and Arthritis

I am proud to say that I am 23 years clean of hard street drugs, which I consider to be crack, cocaine, heroin, and meth, but thanks to cannabis and its medical value I was able to kick the hard street drugs.

In 2009, after having two collapsed lungs caused by my arthritis, I was unable to work and I lost a great job. It took me a year to find another job that would work for me with my disability. Shortly after 2010, I was told I had thyroid and lung cancer. Well, I lost my second good job due to the cancer and procedures. My world was turned upside down and I lost everything I owned. Sad to say SSI doesn’t think this is a disability! I refused any kind of treatment for the cancer, and instead sought Cannabis because it has been proven to saves lives and kill cancer cells. My doctor wasn’t on board with it and said it wouldn’t work.

I had surgery to take care of the thyroid problem. I did a lot of research and decided to drive to California in search of two different strains of cannabis, one low in THC and high in CBD to treat the cancer, the other high in THC to smoke for the pain and to help me eat and sleep. I found the medicine I needed and drove home to make the CBD oil, which I learned how to make from people in California and from an online resource.


At this point I knew what type of medicine I had and knew the dose to use...a few drops of oil a day. At my two month checkup, tests showed less cancer cells. After eight months, 50% of the cancer cells were gone. One year and two months later, my doctor looked at me and was amazed at how it had worked. You couldn't even tell I had had cancer. I am going on three years cancer-free and still doing great. My doctor is now looking into more studies about cannabis.

Cannabis saved my life and is still the best medicine I have ever taken. I had no negative side effects or damage done to my body like what occurs with from FDA approved chemicals.

Kids Need Heroes

Monroe and his sisters EvaLynn and Helena with Senator Donald White. Caring, compassionate legislators are our heroes!

Tuesday, April 1, 2014

THANK YOU!

Thank you to all of those who came out to rally at the Capital for Cannabis Reform 
and those who came to support the Campaign for Compassion fundraiser! 

We do not have the exact amount we raised yet, but we felt that it was a very successful effort!

The bands who gave of their time were incredible! We are very appreciative of their support!

If you were not able to come out last night, you still have opportunity to support our cause.
Our current efforts are to support the Foster and Houk families.
Find more information here and click on the donate button to the left to contribute to this worthy cause!

Below are a few pictures and news clips highlighting yesterday's events.


Top: Artwork for silent auction; Middle: the faces of medical cannabis; Bottom: Lydia Foster, family and friends




Dana Ulrich and Latrisha Bentch with Senator Mike Folmer

Matt Sharrer and Debbie Foster


Bidding at the silent auction

One of the bands...playing for a cause!
ABC27 News: Fundraiser helps support medical marijuana families

A few shots from the rally.
Luke Shultz and his wife Kim, after a meet and greet with PA Sen. Judy Schwank, who vowed to vote "yes" on SB1182! THANK YOU SENATOR!!!
Photos from the Evening Sun
http://www.local21news.com/news/features/top-stories/stories//images/Marijuana_7465.jpg
CBS 21 News: Pennsylvania Parents Rally for Medical Marijuana


CBS Pittsburgh
http://www.wgal.com/news/susquehanna-valley/state/parents-vets-nurses-push-for-legalization-of-medical-marijuana-in-pa/25255040

abc27: The Capital Rotunda was filled with people...
ABC 27 News: The Capital Rotunda was filled with people...
Matt Sharrer, center, and wife Angie, center right, were among the supporters of cannabis reform at rally Monday at the Capitol rotunda in Harrisburg. The
Marijuana rally pushes for legalization, reform