De-stigmatizing a plant for suffering children everywhere

Friday, July 4, 2014

Medical Cannabis Refugees Invite Obama to A-Day-In-The-Life

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Last month the Obama Administration announced that the President will be doing a series of "A-Day-In-The-Life" visits with average Americans throughout the country.

The Parents Coalition to Reschedule Medical Cannabis has begun a letter writing campaign to The President on behalf of families seeking medical cannabis treatments for sick children or adults. Those who have had to move from home states for treatment elsewhere or those living in prohibitive states and unable to move are invited to submit their stories to The Coalition in WORD format at The letters will be bundled and submitted to the White House after July 7th.

The campaign is being coordinated by Kristi Baggarly, a lead Coalition organizer from Georgia.

"I found out about President Obama's tour through the White House email updates", said Baggarly. "This email caught my eye for some reason and, while I think the campaign is driven by his desire to learn more about the economic hardships of Americans, I thought that he should also hear about the struggle of families who are literally fighting for their children's lives.  This fight often leads to the financial distress that many Americans experience, and the economic downturn certainly has not helped. I realize that this may not be something that is on his radar, but I believe in the power of our team and that we can help bring some awareness to our national leaders.  We all have done what many considered the impossible at the state level, and there is no doubt in my mind that working together, we can bring this kind of change across the country!"

Annie Galloway moved her family from Vermont to Colorado so her epileptic daughter could obtain Charlotte's Web, a non-psychoactive cannabis/hemp oil high in cannabidiol, to treat her seizures. From Galloway's letter:

"I chose to leave our family, friends, my work and her Care Team to see if this treatment would offer her a better life.  She has suffered with Intractable Epilepsy for almost 5 years.  Since being here we have met a wonderful group of families who are like ours, we have joined together to support one another as we try this new life changing therapy.  I hope that you will visit our home so that you can learn more about what it is like to live with such a serious medical condition and what it is like to be trying to give my daughter a better chance at life with the controversial treatment of Cannabis.".

Thousands of American families live this reality right now. If yours is one of them The President needs to hear your story. To find out more visit The Coalition's event page from this effort here.
Further Reading:
Editor's Note:
The Parents Coalition to Reschedule Medical Cannabis recently expanded its presence from being a southern regional group to a collection of national advocates. Their Facebook page is still listed under their former name, Southeast Coalition for Medical Cannabis Research, but that will soon change.

Saturday, June 28, 2014

Parents Barrage Attorney General Holder with Postcards Advocating Cannabis Rescheduling

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A national postcard mail in campaign to Attorney General Eric Holder will go live the morning of July 1st 2014. The timing is specific so the cards arrive on the same date in a flurry of pleas for the rescheduling of medical cannabis.

Post Cards for a Cause is inspired and coordinated by Pennsylvania parent medical cannabis activist, Dana Nadzam Ulrich.
"Postcards are the easiest and cheapest way to get our message to those who can make this change.", said Ulrich. "That being said, postcards will also allow your messages to be seen all along their route to their destinations. Many hands and eyes will fall upon your cards as they travel from all corners of the country."

And spread the message they will. Post cards depict sick children sharing the message of their unnecessary suffering. Many parents have ordered hundreds, even thousands to pass out to friends and relatives for the mass mailing.

Even if it is too late for you to order yours from Vista Print you could still print a picture of yourself or your child, or a ribbon from your condition on card stock and pass them out to family and friends to be mailed on the first.

Here is a small sample of some of the cards going out Tuesday. To see a more visit Post Cards for a Cause.

In Memory of Sabina Rose.

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Who could deny this epileptic baby his right to this treatment?

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Or this epileptic angel?

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Or this darling?

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Who would deny this beautiful young woman her best chance to live?

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Or this sweet girl?

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Who would deny this boy a world less assaulting to his senses?

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Who wouldn't do everything possible to protect her access?

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Or do everything in his power to save these children?

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Who wouldn't bend over backwards and sideways
to give him a better life?

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She deserves better.

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And so does she.

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What is their quality of life?

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Or his?

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What would you do Mr. Holder, Mrs. Burwell, President Obama if these were your children?

Friday, June 27, 2014

Special Needs Parents Group Urges HHS Secretary Burwell to Reschedule Cannabis

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Parents Coalition to Reschedule Medical Cannabis has begun a letter writing campaign urging the new Health and Human Services Secretary, Sylvia Burwell, to reschedule medical cannabis. Mrs. Burwell was sworn into office on June 9th to replace outgoing Secretary Kathleen Sebelius.

The effort is being spearheaded by Jill Swing of South Carolina, a lead Coalition organizer. She decided to take this on after reading the federal Controlled Substances Act and learning that the HHS Secretary has the power to recommend rescheduling any drug on the list.

"Sub-chapter I-Control and Enforcement, Part B Section 811:.Rules of the Attorney  General under this subsection may be initiated by the Attorney General (1) on his own    motion, (2) at the request of the Health and Human Services Secretary or (3) by petition of any interested party." 

"Up until that point all the focus was on the Attorney General concerning rescheduling, but now I learned there was another person who could make that happen.", said Swing. "What I hope to accomplish is that by sharing our stories, we will reach her on a personal level (she has two young children) and encourage her to request that Attorney General Eric Holder reschedule. Also, under her Agency there is something called the 'Guidance to Procedures for the Provision of Marijuana for Medical Research' which is an additional review for any non NIH-funded protocols. Marijuana in the ONLY Schedule I substance that has to undergo such scrutiny in order to allow research to be done. So, in addition to asking her to reschedule, we will be asking her do away with this policy, to make marijuana more accessible for research."

The Parents Coalition to Reschedule Medical Cannabis invites anyone who wants to write a letter to join this campaign. Interested persons can join the Facebook event Letter to Secretary of HHS, Sylvia Matthews Burwell. The page includes the Secretary's address for the header and more details about the campaign. Send a one page letter in WORD format detailing yours or your child's struggle and how medical cannabis has or might help to Jill by July 6th at Pictures welcome. All letters will be bundled together and sent on July 7th.

The Coalition also invites state legislators who have passed medical cannabis laws to write letters detailing the barriers Schedule I status for cannabis creates to patient access in their states.

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Thursday, April 3, 2014

Cannabidiol (CBD) & Breast Cancer Links

The local media focuses on epilepsy, since that community lead the charge for cannabidiol in Kentucky, but the new law actually does not limit by condition. It merely declassifies cannabidiol from the definition of marijuana and allows doctors affiliated with The University of Kentucky and The University of Louisville to prescribe high CBD products or use them in clinical trials. Even though no product is available yet in Kentucky, it can't hurt to start those conversations with doctors now so that ground is already covered by the time CBD Oil arrives.

Since I am currently being treated for breast cancer, I want to bring all the animal model research on cannabidiol and that condition to my doctor at James Graham Brown Cancer Center. I needed a place to store those links, so I decided to create a post on this blog for them, even though this is an autism and epilepsy website. Later I will add links for other forms of cancer so patients interested in bringing research to their own doctors can print them. At a later date I may make a separate website for CBD and cancer, but right now I'm busy with autism and epilepsy.

Cannabidiol and Breast Cancer Links

Pathways mediating the effects of cannabidiol on the reduction of breast cancer cell proliferation, invasion, and metastasis
Breast Cancer Res Treat. 2012 May;133(1):401-4.

Cannabidiol as a novel inhibitor of Id-1 gene expression in aggressive breast cancer cells.Mol Cancer Ther. 2007 Nov;6(11):2921-7.

PLoS One. 2011;6(9):e23901. d oi: 10.1371/journal.pone.0023901. Epub 2011 Sep 7.
Crosstalk between chemokine receptor CXCR4 and cannabinoid receptor CB2 in modulating breast cancer growth and invasion.

Anti-tumor activity of plant cannabinoids with emphasis on the effect of cannabidiol on human breast carcinomaAmerican Society for Pharmacology and Experimental Therapeutics

Cannabinoids reduce ErbB2-driven breast cancer progression through Akt inhibitionMolecular Cancer 2010, 9:196

Cannabinoids: a new hope for breast cancer therapy?
Cancer Treat Rev. 2012 Nov;38(7):911-8.

The endogenous cannabinoid anandamide inhibits human breastcancer cell proliferationProc. Natl. Acad. Sci. USAVol. 95, pp. 8375–8380, July 1998

Cannabis Compound May Stop Metastatic Breast Cancer - ABC News

Animal Model Studies on Cannabidiol and Protection From Chemo Side Effects

Cannabidiol Inhibits Paclitaxel Neuropathic Pain Through 5-HT(1A) Receptors Without Diminishing Nervous System Functioning or Chemo Efficacy
British Journal of Pharmacology, February 14, 2014

Cardioprotective Effect of Rats Exposed to Doxorubicin Toxicity
Environmental Toxicology, September 2013

Sunday, March 23, 2014

Kentucky: SB 124, Clara's Law, House Vote This Week

The Vote

The vote for SB 124, now amended to Clara's Law (The CBD or Cannabidiol Bill), will likely happen this Wednesday, March 26, 2014. The full House usually meets between 2:00 and 4:00 p.m. Right now this is word of mouth, as Wednesday's schedule has not been posted, but I will be tracking the LRC page closely and will inform you of any changes or updates. I just wanted to give a head's up so those hoping to attend have some time to plan.

How To Help

Please contact your Representative at 1-800-372-7181 and ask him or her to vote for SB 124. Even if you have called before it is important to do so again since this is a new vote.

Yours in This,


Wednesday, March 19, 2014

Kentucky: CBD Bill Goes to House Judiciary Committee Vote Today/How To Help

CBD Bill Up For Committee Vote

Today, March 19, 2014 at 12:00 p.m., The House Judiciary Committee will hear testimony and vote on the Cannabidiol Oil Bill (CBD) in The Capital Annex Building room 171.

How You Can Help

1. Attend if you can. Bring an 8 x10 picture of your child or loved one who suffers from epilepsy, autism, or any other condition that benefits from CBD.

2. Visit the offices of your Congressperson and/or Judiciary Committee members before the vote. Tell them why you support CBD oil for Kentucky now.

3. Call the legislative hotline THIS MORNING at 1-800-372-7181. Tell the operator to leave a message for ALL members of The Judiciary Committee AND your Congressperson to support the passage of SB 124.


If the bill clears committee today it still needs to pass a full House floor vote (possibly next week) and be signed by The Governor, so please check the CBD Oil Facebook page daily for updates. Also, please keep the calls going for the broader medical cannabis bills. Let's get this done.

Thank you!

Yours in This,

Suzanne M. De Gregorio
March 19, 2014
Louisville, Kentucky   

Saturday, February 22, 2014

Kentucky: Help Cannabidiol Bill Get To Senate Floor

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On Wednesday the Senate Health and Welfare Committee held a hearing on Cannabidiol Oil. Dr. Bret Smith from The University of Kentucky Epilepsy Department testified about cannabidiol research. Committee chair, Senator Julie Denton, will call this bill up for a committee vote with enough support. If it clears the Health and Welfare Committee it will go to the Senate floor for a full vote.

How To Help

Call the legislative hotline at 1-800-372-7181 and tell the operator to leave a message for all members of the Health and Welfare Committee asking them to pass SB 124 favorably from committee.

Medical Hemp and Medical Cannabis

There are differing opinions among activists about the merits and shortcomings of CBD only bills. Though I appreciate all sides of this argument, I come down in support of both the medical cannabis and medical hemp bills (CBD bill). I see these as separate issues because under state and federal guidelines many CBD strains qualify as hemp and not cannabis. Why advocate for hemp as marijuana, especially if doing so could unnecessarily delay access, possibly for years?

Passage of Medical Cannabis Bills Equally Important

Though CBD strains are helpful for conditions like cancer, epilepsy, Crohn's and colitis, and diabetes, many conditions, including some of those mentioned, also benefit from the addition of a full spectrum cannabis strain. Hemp and cannabis strains appear to work in synergy and make one another's components work even better.

For example, as a cancer patient CBD could help me, but the THCA in full spectrum strains would add additional cancer fighting properties. As a mother and a teacher I don't want to smoke anything or get high. But even with the cannabis strains there are options. I could take a full spectrum cannabis oil extract from raw plant. This method would leave THC in its precursor THCA form, which has no psychoactive components but retains the medicinal properties of THC.

For other conditions the smoked form is the most medicinal means of delivery. You never know which configuration your doctor will find works best for you. That's why it is important to keep all strains and delivery method options open in legislation. Please support SB 43 and HB 350, The Cannabis Compassion Act, as well.

Press the Fight,

Suzanne De Gregorio
Louisville, Kentucky
February 22, 2014

Sunday, February 9, 2014

CBD Oil Bill Introduced in Kentucky & How to Support It

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This week in Kentucky a CBD Oil bill was introduced by Senator Julie Denton (R-Louisville). If passed, doctors affiliated with Kentucky universities that have medical school will be able to prescribe CBD and it may also be used in clinical trials.

This does not limit by age or condition, which is good since science suggests cannabidiol may help a wide array of conditions, not just epilepsy. Anything from cancer, strokes, Crohn's Disease, Multiple Sclerosis, Parkinson's Disease, and Diabetes to name a few. I will link some of that research at the bottom of this page and the sheer volume will overwhelm you. Read it then answer this question: don't you want the laws already in place in case God forbid yourself or a loved one develops one of these all too common illnesses?

Sick people need relief, especially given many are exhausting pharmaceutical options. Since beginning this campaign in November my son has failed another pharmaceutical anticonvulsant. This time an adverse reaction to the medication itself gave him the impulse control of a toddler. He was running in front of cars, trying to pull boiling pots of water onto himself, sticking his hand in the garbage disposal, and otherwise harming himself and others. This drug carries the risk of suicidal impulses. Is doing dangerous stuff how suicidal impulses manifest in the minimally verbal? How am I supposed to even know? Thankfully, he has calmed down since we titrated down that drug, but there is still the matter of complete epilepsy control, which we've never attained with anything except steroids. CBD oil can't come to Kentucky fast enough!

Special thanks to Senator Denton and the other co-sponsors of SB 124.

Please read the bill and support SB 124. Call your Senator at 1-800-372-7181 and ask him or her to support SB 124. If you don't know who your senator is give the operator your zip code and she will deliver the message. Thank you.

Suzanne M. De Gregorio
Louisville, Kentucky
February 9th, 2014

Research into Cannabidiol for various conditions. This list is by no means complete. I just had to stop somewhere.

Breast Cancer:

Pathways mediating the effects of cannabidiol on the reduction of breast cancer cell proliferation, invasion, and metastasis
Breast Cancer Res Treat. 2012 May;133(1):401-4.

Cannabidiol as a novel inhibitor of Id-1 gene expression in aggressive breast cancer cells.Mol Cancer Ther. 2007 Nov;6(11):2921-7.

PLoS One. 2011;6(9):e23901. doi: 10.1371/journal.pone.0023901. Epub 2011 Sep 7.
Crosstalk between chemokine receptor CXCR4 and cannabinoid receptor CB2 in modulating breast cancer growth and invasion.

Anti-tumor activity of plant cannabinoids with emphasis on the effect of cannabidiol on human breast carcinomaAmerican Society for Pharmacology and Experimental Therapeutics

Cannabinoids reduce ErbB2-driven breast cancer progression through Akt inhibitionMolecular Cancer 2010, 9:196

Cannabinoids: a new hope for breast cancer therapy?
Cancer Treat Rev. 2012 Nov;38(7):911-8.

The endogenous cannabinoid anandamide inhibits human breastcancer cell proliferationProc. Natl. Acad. Sci. USAVol. 95, pp. 8375–8380, July 1998

Cannabis Compound May Stop Metastatic Breast Cancer - ABC News

*There is research for cannabidiol and other types of cancer, but in the interest of space I'm focusing on the most common one. For a more complete list click here.


Pharmaceuticals 2010, 3(7), 2197-2212; doi:10.3390/ph3072197
Therapeutic Potential of Non-Psychotropic Cannabidiol in Ischemic Stroke

Cannabidiol Prevents Cerebral Infarction Via a Serotonergic 5-Hydroxytryptamine1A Receptor–Dependent Mechanism
Journal - Stroke


Autoimmunity. 2006 Mar;39(2):143-51.

Cannabidiol lowers incidence of diabetes in non-obese diabetic mice.

Curr Pharmacogenomics Person Med. 2009 September; 7(3): 215–222.

Cannabidiol As a Putative Novel Therapy for Diabetic Retinopathy: A Postulated Mechanism of Action as an Entry Point for Biomarker-Guided Clinical Development

Cannabidiol Arrests Onset of Autoimmune Diabetes in NOD MiceNeuropharmacology. 2008 January; 54(1): 244–249.

Rev. Bras. Psiquiatr. vol.30 no.3 São Paulo Sept. 2008

Cannabidiol: from an inactive cannabinoid to a drug with wide spectrum of action

Am J Physiol Heart Circ Physiol. 2007 July; 293(1): H610–H619.

Cannabidiol attenuates high glucose-induced endothelial cell inflammatory response and barrier disruption

Eur J Pharmacol. 2013 Nov 15;720(1-3):376-82. 2013 Oct 8.

Cannabinoids alter endothelial function in the Zucker rat model of type 2 diabetes.

Free Radic Biol Med. 2011 Sep 1;51(5):1054-61. 2011 Jan 14.

Cannabidiol as an emergent therapeutic strategy for lessening the impact of inflammation on oxidative stress.

Crohns's Disease and Colitis

Cannabidiol Reduces Intestinal Inflammation through the Control of Neuroimmune Axis   Mariateresa Cipriano,   Published: December 06, 2011•DOI: 10.1371/journal.pone.0028159

Cannabidiol in Inflammatory Bowel Diseases: ABrief OverviewPHYTOTHERAPY RESEARCHPhytother. Res. (2012)

Z Gastroenterol 2011; 49 - A12
DOI: 10.1055/s-0031-1278443

Effect of different dose cannabidiol treatment on experimental induced colitis

Cytokine. 2014 Feb;65(2):236-44. doi: 10.1016/j.cyto.2013.10.006. Epub 2013 Nov 13.

Interleukin 17A evoked mucosal damage is attenuated by cannabidiol and anandamide in a human colonic explant model.

Pharmacology. 2012;89(3-4):149-55. doi: 10.1159/000336871. Epub 2012 Mar 12.

Topical and systemic cannabidiol improves trinitrobenzene sulfonic acid colitis in mice.

J Mol Med (Berl). 2009 Nov;87(11):1111-21. doi: 10.1007/s00109-009-0512-x. Epub 2009 Aug 20.

Cannabidiol, a safe and non-psychotropic ingredient of the marijuana plant Cannabis sativa, is protective in a murine model of colitis.

Autism & Epilepsy

There are dozens of animal model studies and a case series report on epilepsy and a few on autism. Rather than re-list them all now click here for the full list.


**Please note: other sativa and indica strains can work in synergy with high CBD strains to produce even better medicinal impact for conditions like cancer and PTSD (which plagues our veterans at record numbers now). SB 124 legalizes the high CBD (cannabidiol) strain. Therefore, please also take a look at SB 43, which would legalize all of them for medicinal purposes only and consider supporting it as well. Thank you.

Saturday, February 8, 2014

Interview with Cannabinoid Researcher Pritesh Kumar

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This is an interview with cannabidinoid researcher, Pritesh Kumar. Mr. Kumar earned a B.S in Biology at The University of Kentucky and a M.S. in Pharmacology at The University of Louisville. In 2014, he will earn his PhD in Pharmacology from The University of Louisville. Since 2009, Pritesh has been a research scientist at The University of Louisville Department of Pharmacology and Toxicology. In 2013, he joined Quantum 9, Inc. Cannabis Consulting and Technology.


Kentucky is fortunate to have a scientist like yourself, with serious interest in the endocannabinoid system and cannabinoids, hailing from our state. Please tell us about your interest in the subject and the research you have done thus far.

Pritesh Kumar:

I have always been fascinated in the endocannabinoid system for several reasons. The way this system modulates and regulates our homeostasis is truly breathtaking. Name any condition or pathology with an inflammatory component, and 95 % of the time the endocannabinoid system is found to play some sort of role. Even from an evolutionary perspective, it is truly amazing that this system has been found in many phylogenetically diverse organisms.

I apologize for the digression. So, our research currently focuses on how ligands (chemical compounds) bind and interact with the cannabinoid receptor 2 (CB2). This receptor is predominantly localized in the peripheral system in immune cells, T cells, B cells, etc. The reason why this receptor is an attractive therapeutic target is because of it’s minimal presence in the central nervous system (CNS). Therefore, any medication targeting this receptor will not elicit the “high.”

Recently, we have been testing the current FDA-approved medications on the market to determine if they have any effects on the endocannabinoid system. As I mentioned previously, we found that a commonly prescribed drug for osteoporosis in post-menopausal women (Raloxfiene) is acting on the CB2 receptor. This bring us to an important point. Patients should have access to all the information of the drug they are taking. For example, it is well known that Raloxifene acts through the estrogen receptor to produce its effects. However, we found that it also interacts with CB2. Now, this interaction could help explain some of its known therapeutic effects or it’s mechanism of action. Furthermore, this drug could be “repurposed” for a different indication for which CB2 is a target (pain, inflammation).


Since your PhD is in pharmacology you would be a great person to address a specific concern of many medical cannabis advocates. Various compounds in the plant appear to work together in an entourage effect to produce medicinal benefits. Many of us are concerned that once they start
isolating these compounds in labs and producing them synthetically for drugs that might not work as well as full plant and there will be more side effects. Are these concerns warranted? 

Pritesh Kumar:

These concerns are warranted. From a pharmacology perspective, it is attractive to isolate a single component and market that as most drugs on the market have a single active ingredient. However, the cannabis plant displays a rather unique pharmacology. Plant-derived cannabinoids often work in concert to produce what is known as the "entourage effect." In this sense, a defined concentration or mixture of cannabinoids is necessary to reach therapeutic effect. For example, Sativex is marketed in Canada for the treatment of multiple sclerosis and this drug contains a 1:1 mixture of THC to CBD.

As to your second question regarding if more side effects will be produced if only the synthetic form is available and marketed. This a bit of a grey area. For example, synthetic cannabinoids are already out on the market and are available at gas stations and corner stores in the form of "K2 or Spice." These synthetic cannabinoids (mainly JWH derived) are very dangerous and consumption has led to a rise in visits to the ER because the compounds in these products are chemical analogues of THC are significantly more potent than THC. Unlike THC which is a partial agonist, these compounds are full agonists for the cannabinoid receptor 1 (CB1).
From a pharmacological perspective, things get complicated when you have to predict how multiple cannabinoids will effect the body. It is often easier to investigate a single component or compound rather than a mixture. That being said, for the cannabis plant, there are multiple layers that often contribute to the beneficial effect of this plant (THC, CBD, CBG, CBN, etc). To answer your question, we still do not know if synthetics will have a worse side effect profile compared to the plant.


What is next in terms of your research? In what direction are you looking once your PhD is completed this year?


I am considering several options at the moment. I  will continue to do research but from a slightly different perspective. I am personally interested in the plant cannabinoids as they may hold tremendous therapeutic benefit and represent an untapped source of potentially novel medications. I will stay on as consultant for Quantum 9, Inc. which is one of few companies out there that are legitimately interested in helping patients in the long run. Personally, I envision operating a company with a research facility in the state of Kentucky which will be heavily focused on the development of medications from plant cannabinoid extractions and perform laboratory testing for cannabis samples once this bill is passed.


Is there anything else you would like to say to our readers about the endocannabinoid system, cannabinoids, and the future of medicinal cannabis?


To the readers, I want to say that the endocannabinoid system is a beautiful network of receptors and enzymes that regulate a broad spectrum of signaling pathways in our bodies. The future of cannabis-based medications is still in its infancy and the rate at which we are developing these types of medications is rapidly increasing.

Pritesh Kumar
Cannabinoid Research Scientist
Quantum 9, Inc.
351 W Hubbard Suite 303 Chicago, IL 60607
888.716.0404 ext 809 

Pritesh Kumar's Peer Reviewed Publications:

1)  Kumar A, Qiao Z, Kumar P, Song ZH. (2012). Effects of Palmitoylethanolamide on Aqueous Humor Outflow.   Invest Ophthalmol Vis Sci. Accepted doi: 10.1167/iovs.11-9294

1.Kumar A, Qiao Z, Kumar P, Song ZH. (2012). Involvement of a non-CB1/CB2 cannabinoid receptor in the    aqueous humor outflow-enhancing effects of abnormal-cannabidiol. Exp Eye Res. Accepted

2.Kumar P, Song ZH. (2013). Identification of raloxifene as a novel CB2 inverse agonist. Biochem Biophys Res Commun. doi: 10.1016/j.bbrc.2013.04.040. [Epub ahead of print]

3. Kotsikorou E, Navas F 3rd, Roche MJ, Gilliam AF, Thomas BF, Seltzman HH, Kumar P, Song ZH, Hurst DP, Lynch DL, Reggio PH (2013).The importance of hydrogen bonding and aromatic stacking to the affinity and efficacy of cannabinoidreceptor CB2 antagonist, 5-(4-chloro-3-methylphenyl)-1-[(4-methylphenyl)methyl]-N-[(1S,2S,4R)-1,3,3-trimethylbicyclo[2.2.1]hept-2-yl]-1H-pyrazole-3-carboxamide (SR144528).

4. Kumar P, Song ZH. (2013). Structure-activity relationships of fatty acid amide ligands in activating and desensitizing G protein-coupled receptor 119. Eur J Pharmacol. doi: 10.1016/j.ejphar.2013.10.044.

Kumar P, Song ZH (2013). CB2 cannabinoid receptor is a novel target for third-generation selective estrogen receptor modulators bazedoxifene and lasofoxifene. Biochem Biophys Res Commun. Accepted.

1.Kumar P, Carrasquer C, Carter A, Song ZH, Cunningham AR (2014). A categorical structure-activity relationship analysis of GPR119. Journal of Molecular Modeling. In press.

Wednesday, January 22, 2014

Allow CBD Oil in Kentucky for Savannah

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This is an interview with Mary Gross of Junction City, Kentucky about her infant daughter, Savannah. I apologize in advance for the wide breaks between paragraphs. It is a HTML coding glitch that I'm trying to work out. Since we have a medical cannabis bill pending in Frankfort, I figure it is more important to get these stories about sick Kentucky kids out than to worry about them looking perfect on the screen. In the meantime, be sure to scroll all the way down so you see everything.


Mary, tell us about your infant daughter Savannah.


Her full name is Savannah Lynn Piscatelli. She was born in November full term. She had a cleft palate and a club foot but other than that was declared healthy. She spent the first four days of her life in Neo-natal Intensive Care Unit learning to eat with the cleft. Once that was accomplished they sent us home.

She seemed fine at that time but the next day I noticed her doing something strange. It looked like a sneeze but it was different. I called to make an appointment at her pediatrician but they told me she needed to go to the emergency room right away. They believed it was infantile spasms and said she would have to go to the University of Kentucky hospital in Lexington. We spent two weeks at UK. After two video EEGs, numerous blood and urine tests, an MRI, and a spinal tap we were given the devastating news that our baby was indeed having infantile spasms, which are a type of seizure. They said she has Ohtahara Syndrome. After looking it up online we were heartbroken: a life expectancy of two years in 50% of children and the other 50% would suffer multiple seizure types throughout their lives, which are practically uncontrollable so they would have extreme developmental delays.
The University of Kentucky Hospital had never seen this before and had no experience with Ohtahara.

They tried a few anti seizure meds at the hospital with no success. Eventually they found a concoction of pharmaceuticals that took her 200-300 spasms a day down to about 75-100. They said it would be a trial and error of meds that will ultimately stop working anyway. We heard from her neurologist after about three weeks at home. He asked us if we would rather try ACTH shots, which are painful and would compromise her immune system in the middle of flu season, or try Sabril, which would more than likely damage her vision permanently. Neither of these were guaranteed to work. It was the hardest decision I have ever had to make with one of my children. It took several sleepless nights before we decided to go with Sabril because the flu would kill her for sure if she got it. The Sabril has reduced her seizures down to about ten a day but she is also is on two other anti seizure meds, as well as a supplement to try to combat the vision loss. She must see an eye doctor every three months but they won't know if her vision is being affected until she is much older and by that time it will be to late.

She sleeps most of the day due to the drowsiness caused by all of her meds.

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Oh, Mary. I can't even imagine. I'm so sorry. I pray we can pull off a miracle and get CBD oil in Kentucky soon so your daughter's health has a chance to improve. Why do you think CBD oil might help Savannah?


The CBD oil has proven to reduce our even eliminate seizures in some cases. It has proven to promote brain cell growth. I have done my research and the two leading causes of death in ohtahara children are chest infections (which I can help prevent by keeping Savannah safe in her home away from people who are sick and keeping my home sanitized, as well as monitor her feeding to prevent aspiration pneumonia) and the other is SUDEP (Sudden Unexpected Death in Epilepsy). I have no control over that beyond finding a way to decrease or eliminate her seizures (which, as previously stated, is being done by CBD oil).

These children also suffer severe developmental delays. Some of it is caused by the syndrome itself, but the seizures also play a very big part in that. Her seizures are near uncontrollable with pharmaceuticals. If we are able to find a medication that stops the kind of seizure she is having it will just transform into another type of seizure. The medications the doctors give her are only temporary solutions if they can find a solution at all. Those medications will have to be changed often and dosages adjusted frequently. Each of those carry their own horrible side effect that will slowly tear down her little body and increase her developmental delays.

The oil is one treatment; no bad side effects! This syndrome also causes limb stiffness which makes it almost impossible to walk. The THC (low and non psychoactive) in the oil would work as a muscle relaxant to combat the stiffness. While she will never fall into her age category for development, with CBD she could learn to walk, to talk, to understand! Without the oil she doesn't stand a chance for any of that. She will be in a wheelchair, lost in a cloud of brain deterioration. It will be over my dead body that happens without a fight. I will leave this state with resentment and go to a state that has compassion and wants to see my daughter and so many others thrive. I would go to hell and back for her if that's what I had to do.

This place (Kentucky) I have loved for my thirty-three years, the place my parents and their parents called home: to turn their back on my baby and deny her this would be a complete disgrace in every sense of the word. And quite frankly, it pisses me off that I would have to fight and beg and plead for this. I have been loyal to Kentucky and it's about damn time it be loyal to me! I'm sorry for the language. This is just so ridiculous to me that there is even a question as to whether or not this should be available. It's a no brainer. It's the greed that makes this an issue for politicians. No real justification from them. And while they pay their little games, our children are suffering and dying. It breaks my heart every day and makes me want to run from this place as fast as I can to a place that offers hope for tomorrow. A place like Colorado. I'm so scared to make this move. It takes me completely out of my comfort zone. I'm a simple country girl who can count the times I've left this state for anything on one hand. I so badly wish it didn't have to be this way.

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I know. It is ridiculous. As I write this my son is thrashing about in pain. But if I go comfort him that makes things worse so I just wait it out, tell him it will be okay, and hope it ends quickly. This is our lives and it does not have to be this way. There are children with my son's same conditions in Colorado who no longer live like this. They thrive now.

It is often said that Kentucky is last in everything. I wonder if sometimes that is because we refuse to make key choices at opportune times. By the time we do eventually make those choices everyone else is already out ahead of us. With that said, I'm madly in love with this place. I always say I may not have been born here but I will die here. I just want us to get with the 21st century on this important issue that concerns sick children and adults.

So what is the plan as of today: is your family definitely moving to Colorado or will you wait out the legislative session to see what happens?


My plan right now is to go to Colorado and establish residency, see doctors, and apply for the red card when I get my income taxes back in about a month or so. It is going to be so costly I just can't afford to do it right now. While I wait for the red card and for our name to come up on the Charlotte's Web waiting list I will come back to Kentucky. Once it is available, I will be going up with Savannah and my three year old daughter, Abigail Piscatelli. My boyfriend, their father, John Piscatelli, will have to stay in Kentucky to work. He has been at his job for over ten years and holds a pretty high position with them. He will support us while we are there and come visit when we can afford that trip. We will do that for a few months as we go through a trial of the CBD Oil. If all goes well John will relocate with us and Colorado will become our home until Kentucky has access to oil.

I dread splitting my family up. We have never been apart and my girls love their daddy very much. I know this is going to be very hard for them, especially Abby. She is a daddy's girl if there ever was one! I have faith that Kentucky will legalize, but I don't have faith that they will really get to work on it and make it accessible to us quickly. Time is of the essence. I'm afraid it could take a year or more to actually have things up and running if the bill does pass. With a life expectancy of only two years, waiting around to see is not really an option for us.


Another family having to split up to get their child what she needs. It is the same story we hear time and time again and yet my ears never get used to it. It is still as shocking to me reading your words as it was when I read those first news reports of parents moving to Colorado so their kids could get the oil. I promise you; we will not stop fighting in Kentucky until all children who need this can legally get the oil here. We will not stop until your family, The Byrds, and the nine other Kentucky families in Colorado can come home.

Is there anything you would like the state legislature to know? We have stated our case; now the ball is in their court.


I would just like them to know that this issue has been put on the back burner too long. We must make change for the well being of the residents of this great state. We are the people they represent and the people say legalize! Don't make us suffer any more. Don't make us leave our homes. Sooner or later the fact that people are fleeing will catch up to Kentucky. This state needs its people. Its believers. Its supporters. So the time has come for politicians to be the believers and the supporters instead of sitting back and watching us go without even a fight.

Mary's Interview With CN2 Louisville At The CBD Oil Senate Committee Hearing On January 15, 2014 

Tuesday, January 21, 2014

Testimony I Would Have Given at Kentucky's Senate Committee Hearing on CBD Oil

I intended to sign up to testify at the Senate Health and Welfare Committee hearing for CBD Oil on January 15, 2014. However, I wasn't able to put my words together in time on account of my recent cancer diagnosis, work, and managing Alex's regressions. A week has passed but this unspoken testimony sticks in my brain like a splinter, so I've decided to bare it here. Thank you for listening.


Alex was born a healthy baby, but by age three there were undeniable red flags. He was so high functioning, though, that the professional evaluating him came back three times before she would even render a diagnosis: Autism. Therapists told us Alex appeared to be a genius, so we had every reason to believe his future could still be bright. But by age six he had an IQ of 52 and was back in diapers. Our child was deconstructing before our eyes and nobody could tell us why.

Eventually we learned that Alex had Multi-Focal Petite Mal Epilepsy and that this was likely responsible for his severe regressions. Simply put, some part of his brain experiences epileptiform activity all day long.

Alex's was prescribed pulse steroid doses for two years. Prednisone was a miracle. My son started talking again and most autistic stereopathy disappeared: arm flapping, repetitive behaviors, verbal jargoning. You name it. Gone. Progress came with great risk, though: osteoporosis, adrenal disease, diabetes. So steroids were abandoned, taking rapid developmental progress and complete seizure control with them.

My son's first anticonvulsant made him obese and raised his liver enzymes, so we stopped giving him that. The new medication gives him the impulse control of a toddler. Now I must constantly be on Alex or he may run into traffic, pull a boiling pot of water onto himself, or try to jump out of a moving vehicle. I won't even get into the aggression. And so, we see the neurologist at the end of the month to possibly try yet another anticonvulsant that will probably not fully control his epilepsy but will impart God knows what new side effects.

There are children in Colorado with Alex's conditions taking CBD Oil who don't live like this anymore. They have impulse control now, less repetitive behaviors, less rage. They appear to have all of the benefits Alex had on steroids without the risky side effects. Without any side effects at all, really. My son deserves that chance, too.


On January 3rd I was diagnosed with cancer. The peer review studies on CBD and full spectrum cannabis's ability to fight cancer seem endless. Here is a recent report from CNN's Sanjay Gupta called CBD vs. Cancer.

I want to access what I believe is my best chance at survival so I can take care of this child who will need me much longer than most kids need their parents. As it stands now, to access this I would have to leave my family and move to a legal state by myself. Since I would only do this as an adjunct to conventional cancer options, moving would make those treatments out-of-network, which I cannot afford. And besides, I need my family now more than ever. I don't want to be alone in a studio apartment somewhere in Denver throwing up into a garbage day-after-day.

WHY DON'T YOU JUST............

I'd like to address some of the suggestions often made to those of us seeking legal access to CBD in prohibitive states and state why these are not options for my family.

1. "Why don't you just move? I'd move in a heartbeat if it were my kid."

Would you? Would you, really? Does anyone really think it is that easy? Ask the families who just moved how that is working out for them. Yes, their epileptic children are doing better and that makes it all worthwhile, but these families are struggling. Jobs are scarce. Some families have had to split up, with half the family staying back home to make income while the other parent is in Colorado with the sick child who cannot legally leave the state with her medication. There are siblings missing their mothers, retirement funds depleted, families without support. All because politicians in home states don't want to allow this because they think it's too hard.

If we were to move it would take my husband a year to get his professional license set up. And, starting over in a new state with no connections would cut his income by half. Autism is expensive and requires every penny we make now, so my family couldn't make it on less. And, we can't risk our health insurance now since I need that now for cancer treatment. This is not the time for my family to be starting over. We shouldn't have to.

2. "Why don't you just buy it on the Black Market? If it were my kid I'd find a way to get it."

In his documentary "Weeds" Sanjay Gupta mentioned how marijuana on the black market is being bred to contain up to 30 % THC (unaltered strains are under 10%) and that this is why some people have adverse reactions to it like panic disorders. There's no way I'm giving that to my son. And, since high CBD strains do not produce a high and are not smoked, they aren't exactly available on the black how market anyhow.

Besides, I place a high premium on being a law abiding citizen. I just do. I'm a mother. A pre-school teacher. I don't care for anything mind altering. I even refused prescription medication after my C-Section surgery and probably will after my lumpectomy, too. Plus, my future is already so uncertain. I still don't even know what cancer treatments I may need.  I don't need to be sitting in a jail cell with my bald chemo head when I should be spending every precious moment with my family.


I have a better idea. Help us. Just help us please. Co-sponsor SB 43, The Cannabis Compassionate Care Act  and update SB 50 to allow CBD Oil into Kentucky as hemp.

Thank you.


Suzanne Maria De Gregorio
January 21st, 2014
Louisville, Kentucky