SB1182 Test

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Recently, Sen. Daylin Leach (D-17) and Sen. Mike Folmer (R-48) teamed up in a bipartisan effort to legalize the use of medical cannabis in Pennsylvania. Our bill, S.B. 1182, already has multiple cosponsors and wide-

ranging support from advocates across the state. However, Gov. Corbett recently said that he would veto any effort to legalize medical cannabis, despite the fact that our bill would save lives and help children who are suffering.

Sen. Leach reached out to Gov. Corbett through an open letter, which you can find here.

Additionally, the parents and family members of the children who would be directly and negatively impacted by a veto of S.B. 1182 have written their own letters to the governor, requesting to meet him and tell their stories. So far, no face-to-face meetings have been arranged. For more information and resources, click here.

SB 1182ResourcesWho Would SB 1182 HelpLetters to the Gov.Responses from the GovNews

Resources

→ Please read, sign and share our petition

→ US National Library of Medicine, National Institutes of Health publications

→  CBD Approved for Childhood Epilepsy Study

→  Cannabidiol (CBD) Fact Sheet

→ A New Marijuana Plant Without the High? It Could Be Good Medicine -  Time Article

→  Project CBD

→ Why Marijuana Should Be Legalized: ‘Regulate Marijuana Like Alcohol’ Campaign Discusses Why Pot Prohibition Has Been A Failure Article

→  Campaign to Regulate Marijuana Like Alcohol

→ Medicinal application for Cocaine at WebMD

→ Dr. Sanjay Gupta and Dr. Shackelford related articles. Be sure to catch the video at the bottom of the page!!

→ Medical Marijuana Brings Relief For Sick Kids -  Article

→  New Treatment for Intractable Seizures in Children Begins Clinical Trials

→ Local Parents Want Bill to Allow Children to Take Medicinal Chemical CBD Fox 43 video

→ 7-Year Old Treated with Medical Marijuana Video

→  PA Gubernatorial Candidate John Hanger Talks Education Policy, Marijuana Reform

→ Clearing the Smoke, The Science of Cannabis A PBS Special

→ Cannabinoids Show Promise In Protecting Brain From Inflammation -  Article

→ Pennsylvania Nurses Officially Endorse Medical Marijuana Article

→  AAMC presents video highlights of news and events about medical marijuana

→ “Its not about politics. Its about my son’s health” – Article

→ Oregon family uses medical marijuana to treat autistic son’s rage - Article

 

Who Would SB 1182 Help

Hannah

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Hannah is a 10 year old little girl with intractable epilepsy. Hannah’s diagnosis is currently unknown. She had her first seizure at 4 months old. Over the years, Hannah has developed various types of seizures. She currently has atleast 100 seizures a week despite daily seizure medication. There have been many times where she has had atleast 300 seizures a day. She is developmentally delayed, non-verbal, and not potty trained as a result of her daily seizures.

Read More →

Anna

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Over the course of the past 2 years, 5 year old Anna has been to three hospitals (John Hopkins, Hershey Medical Center and Pittsburgh Children’s Hospital. She is also under the care of a pediatric neurologist and a psychiatrist who have prescribed over 10 different medications in an attempt to lessen her seizures and anxiety. She has suffered  through two diet regimes: Modified Adkins and Ketogenic diet and is currently facing the prospect of further testing and the possibility of having her frontal lobe and left emporal lobe removed ( 1/4 of her brain).

Read More →

Cameron

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This is my beautiful Cameron. He is almost 6, but functions like an infant. He was not always like this. Cameron has severe Epilepsy with an undiagnosed mitochondrial disease. He used to be a strong, healthy and happy baby boy. His first seizure was right before his first birthday, and he started having hundreds daily at around 15 months old. Doctors have done extensive testing and have tried almost all available treatment options on Cameron.

Read More →

Christopher

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My name is Deena Kenney and I am the mother to a teenage boy with severe epilepsy. I have been a lifelong resident of Pennsylvania. I reside in Bethlehem ( Lehigh County). I am asking you today to read my story and seriously consider trying to help me and other parents get the medicine we so desperately need by legalizing medical marijuana in this state! My son Christopher was born September 3, 1996. Six weeks later he started having seizures. On Oct. 15, 1996 he was diagnosed with an illness that I had never heard of before called Tuberous Sclerosis.

Read More →

Diana

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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 and regression and even insomnia.

Read More →

Elias

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Elias is 3 yrs old diagnosed with Dravet syndrome. He began having seizures at 5 months & they said he most  likely outgrow it at the time, but not in our case. His seizures progressed and while he is on 3 anti seizure  meds, the seizures are still not control, he is still seizing multiple times on a weekly basis.

Read More →

Jackson

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Jacks life changed a week after his 5th birthday when he was rushed to Hershey Medical center after having a seizure on our bedroom floor. Our previously healthy boy went in to “Status” basically one long seizure that medications couldn’t stop or control…He spent 3 months in the PICU at Hershey med (7 weeks in a pentobarbital coma). During that time doctors tried 10 different seizure meds and combinations of them, IVIG, Steroids, the ketogenic diet…yet he continued to have seizure daily.

Read More →

Lorelei

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Lorelei is six and was diagnosed with epilepsy four years ago. She has been on over ten different medications as well as a myriad of combinations of those medications and the Ketogenic diet, all with little to no success. Lorelei suffers hundreds of seizures every day. Her condition and her pharmaceuticals impact her life in so many ways, including, but not limited to, developmental delays, behavioral problems, sensory processing delays, emotional and social deficits and lack of impulse control.

Read More →

Sydney

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Sydney Michaels lives in Southwestern Pennsylvania. She had her first seizure just days before she turned three months old. That seizure lasted well over 20 minutes. Within weeks, her seizures rapidly increased in number, frequency, and length. Multiple drugs & combinations of drugs were attempted and failed. New seizure typescontinually emerged. No answers were given as to why the seizures were occurring, only that she would probably grow out of them.

Read More →

Letters to the Governor

From: Lolly Bentch Myers
Subject: meeting request
Date: November 22, 2013 1:34:00 PM EST
To:  Governor’s Office

Hi. My name is Latrisha Bentch. I also go by Lolly. I am advocating for Cannabidiol Treatment Therapy for my daughter, Anna. Anna just turned 6. She suffers from Irritractable Epilepsy. She has somewhere between 60-80 seizures everyday, in spite of being treated with anticonvulsants.

I’m just a desperate mom. I have no hidden agenda. I just want to be able to speak to Governor Corbett about my concerns for my daughter. The meeting would consist of myself, my daughter, Anna, my husband, Mark Myers, and his aunt, Deborah Welsh.

Please let me know as soon as possible what to expect next, or if there is anything else I should provide you with in order to expedite this request. Thank you for your time, – Lolly

From: Heather Shuker
Date: Sat, Nov 23, 2013 at 11:53 AM
Subject: Meeting Request with Governor Corbett
To:  Governor’s Office

Hello Governor Corbett -

I’m a Mom to Hannah Pallas, a 10 year little girl who suffers from intractable epilepsy and has a syndrome called Lennox Gastaut. Her clinical diagnosis is currently unknown. Hannah is out of options to control her seizures. She is quickly declining. She has been on over 18 seizure medications, tried and failed the Ketogenic Diet and had a vagus nerve stimulator implanted. She still has atleast 100 seizures a week. Many times the seizures have been as high as 300 seizures a day. We administer emergency medication atleast weekly. Hannah is developmentally delayed, non-verbal and not potty trained. Hannah no longer smiles, laughs, feeds herself, or enjoys her favorite things such as running around outside and jumping on her trampoline … due to the side effects from the antiepileptic seizure medications she is taking along with the effects of the weekly use of emergency medications.

We are in desperate need of medical marijuana. Medical marijuana is an oil that is high in CBD and has very low THC. This will not be smoked and our children will not get high from it. We are asking that this drug status be changed to a Schedule 2 drug … as it does have medicinal healing qualities. It has been proven to help children with epilepsy. The CNN episode with Dr. Sanjay Gupta on “Charlotte Figi” proves this.

CNN Link: http://www.youtube.com/watch?v=tShnVEmdS2o

I am part of an organization in Pennsylvania ” PA Parents for Legalizing MMJ”. We are a group of individuals who are fighting for a better quality of life for our loved ones and for their right to live. I am asking that Governor Corbett please set-up time to meet with Hannah and I so that we can share our story. We are flexible with our schedule and therefore will be available to meet at any time.

I created a video of my daughter Hannah to depict how poor her quality of life has become as a result of the anti-epileptic medications she is on. It is difficult to watch and can be viewed by searching: “Heather Shuker Intractable Epilepsy” on YouTube.

YouTube Link: http://www.youtube.com/watch?v=97uhkI5IVaw

I could even meet with Governor Corbett locally if that works out better. I live in Butler County but grew up in Shaler which is not far from where Governor Corbett is from. I drive through the city of Pittsburgh atleast 3 days a week for work. Please let me know what works best for Governor Corbett.

Our children desperately need Medical Marijuana to save their lives. We are running out of time. We need HB1182 to pass! Our children should not have to die because we are waiting on the federal government to legalize before our state.

I look forward to your reply -

Thank you for your prompt attention to this time sensitive mission -

Heather Shuker
Mom to Hannah Pallas

From: Louann Speese Stanley
Subject: Face to face meeting with Governor Corbett
Date: November 24, 2013 1:31:35 PM EST
To:  Governor’s Office

I am involved with groups advocating for CBD for our children. CBD is a component found in Medical Cannabis which is extracted and NOT SMOKED.

We are interested in speaking with the Governor personally to talk about our lives with a child with severe forms of epilepsy not controlled by the FDA drugs. MOST of these drugs ARE NOT approved for our children but are prescribed anyway because nothing else works and these drugs are not working. Let us not forget the debilitating side effects: insomnia, regression, cognitive delays, and damage to their internal organs.

I would like a meeting with myself and my daughter Diana who is 16 years old and on anti seizure medications since the age of 9 days. I would also like to include: Danial Kofalt PhD , Lolly Myers & Anna, Dana Ulrich & Lorelei, Heather Shuker & Hannah, Julie Michaels & Sydney, Christine Baunn & Garrett, Amy Houk & Cameron and Denna Kenedy. We as parents want our State government to do what is right and support us and our Doctors in trying this amazing miracle put on this Earth by God our creator.

Please consider our request and take the time to hear what “WE” have to say.

Sincerely,
Louann Speese-Stanley

 

Responses from the Governor

“As a father and grandfather, as well as being the governor, one of his primary concerns is obviously the safety and health of children,” said Jay Pagni, a spokesman for Corbett.

However, at this time, the governor would not support the bill, according to Pagni. He said marijuana is still considered a controlled substance and Corbett wants to wait until the federal Food and Drug Administration makes a ruling on the drug being used for medical purposes.

“Even those he’s opposed, it does not decrease his compassion for children,” Pagni said.

From: Governors Office
Subject: RE: meeting request
Date: November 26, 2013 9:28:33 AM EST
To: Lolly Bentch Myers

Lolly,

Thank you for your email, I have forwarded your request onto the Governor’s Deputy Chief-of-Staff, Todd Shamash, Todd’s assistant Terri will be in touch directly.

Thanks again.

Director of Scheduling
Governor’s Scheduling Office
308 Main Capitol Building | Harrisburg, PA 17120
Phone: 717.772.9041 | Fax: 717.783.1153
www.governor.pa.gov

News Articles

→ November 13, 2013: Central Pennsylvania conservative joins medical marijuana push -Pennlive

→ November 18, 2013: Leach offers plan for limited medical marijuana in Pa. – News Works

→ November 18, 2013: Supporters, lawmakers rally for medical marijuana – WHTM – ABC 27

→ November 18, 2013: Bipartisan, albeit small, support for medical marijuana  - WITF

→ November 18, 2013:  Push For Medical Marijuana – WTAJ News

→ November 18, 2013: Pa. state senators to introduce marijuana bill TribLive

→ November 18, 2013: Pa. medical marijuana bill has bi-partisan support - Citizens Voice

→ November 18, 2013:  Sen. Leach introduces bill to legalize liquid marijuana medication - The Times  Herald

→ November 18, 2013: Extreme liberal from Philly area agrees with extreme conservative from midstate on medical marijuana - Pennlive

→ November 18, 2013: Leach is right, Corbett wrong on medical marijuana: PennLive letters - Pennlive