De-stigmatizing a plant for suffering children everywhere

Friday, July 4, 2014

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

 photo obamafamily.jpg

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

 photo Eric_Holder_official_portrait.jpg

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.

 photo postcard1-2.jpg

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

 photo postcards1.jpg

Or this epileptic angel?

 photo postcard1.jpg

Or this darling?

 photo postcard1-1.jpg

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

 photo postcard1-3.jpg

Or this sweet girl?

 photo postcard1-4.jpg

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

 photo postcard1-5.jpg

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

 photo postcard1-6.jpg

Or do everything in his power to save these children?

 photo postcard1-7.jpg

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

 photo postcard1-8.jpg

She deserves better.

 photo 52715f9e-9a67-4322-9168-ead0b977c930.jpg

And so does she.

 photo postcard1-10.jpg

What is their quality of life?

 photo postcard1-11.jpg

Or his?

 photo alexholder.jpg

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

 photo sylviaburwellpic.jpg

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.

 photo ireportjillsdaughter.jpg

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

 photo CBD.jpg

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