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Please refer all questions to Children's Hospital Colorado using the contacts on the poster.
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Zaki Celebrates Three Years Seizure Freedom

Fall is upon us. I love this season. I always have. Even as a child watching with envy as the leaves defiantly did whatever they wanted; changing colors, and then as if saying, “I’m all done here…” falling to the ground to be a crunchy treat beneath my feet. Now, this season marks an anniversary for my family. A time of reflection of what my family has been through with Zaki (not unlike what you have been through.) From 17 pharmaceuticals failing him, hundreds of thousands of seizures, and hospice to Zaki also defiantly whispering in his spirit, “I am all done here….” and his healing beginning. We are three years seizure free in a couple of days, and he has a message for you…

I have a message also. Enjoy the season. Soak up every second with your friends and family. If that decade of unrest taught me anything, it was to be in the moment. I know some of you are away from your “original” family and friends, and I hope that you will connect with your RoC family here during this season; we have a ton of fun things for you to get involved with and make countless memories. You are not alone. In fact you are likely surrounded by more people who “get it” than you ever have been. I am incredibly proud of that. And for those of you not in CO, hold your family close. Enjoy this time. It is all we have. When it is gone, it is never to be regained.

I also get reflective of the year behind us, and tirelessly motivated to end the short remainder of the year with a bang. How many more families can we help? What can we do better? How can we serve you more, those who RoC our world? Whether I see you at the National 5k in a few days, or talk to you over the phone about our research opportunities, or maybe we can break bread at our end of the year client and volunteer appreciation holiday party… know that between now and then, you are in my thoughts, and I am hoping for improved health and quality of life for you and your loved ones. Also know that we are here to assist you in any way we can.

My team extends their love and warmth to you as we enter these last couple of months of another amazing year,

Heather Jackson, Executive Director

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Observational Research Registry (ORR) Update

In the last newsletter we announced the launch of the General Observational Research Registry (ORR). Sorry for the delay, we were making it perfect, it has now arrived. We had several willing participants call to find out more information on how to join, thank you for your interest you can enroll now. We sincerely appreciate your willingness to participate! Whether you have pain, cancer, multiple sclerosis or another chronic condition we want to hear about your response with cannabinoid products. The registry is IRB (Institutional Review Board) approved, which is the same process that a University goes through to conduct research. When is the last time you had the ability to impact health care is such a powerful way? If you have any questions, we would love to talk you! This email address is being protected from spambots. You need JavaScript enabled to view it. 719-347-5400 ext 109

Register here

Research Update

Research is a primary mission of RoC. Conducting research produces benefits in a multitude of ways. It provides the scientific information necessary to expand access; it also provides an in-depth look at diagnosis specific dosing for different cannabinoids. It is with research efforts that we have learned how well CBD works in a multitude of different cancers.

It is through research that we have been able to provide undeniable evidence that cannabis is helping with neurodegenerative diseases and it is from research that we can generate statistics on exactly how much money is being saved by clients and subsequently health insurance providers from using cannabinoid products. Your participation will also guide where clinical research needs to advance as well. If you are interested in participating, we have two observational research registries (ORRs): one specific to epilepsy and another for all other conditions. You can find the link in your client portal. If you entered a baseline on the epilepsy ORR, and never touched it again, it is not too late to enter a followup and update us on how you or your loved one is doing now. Thanks for participating and advancing our research initiatives.

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SPECIAL ASSIGNMENT: We have a special assignment for you. 46 of the 50 states had representatives vote in favor of the Perry/Dold Amendment. However, only about 50 of them are cosponsoring our bill. There are still 252 more that can get on board, and we only need 100 total. We are confident that with your help we can easily meet or exceed that number! Please click here to check if your Representative is one of them. We can’t stress how important you are. It could be your call, email or story to change a mind and make history.

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Senate Caucus on International Narcotics Control
Hearing: “Cannabidiol: Barriers to Research and Potential Medical Benefits” Wednesday, June 24, 2015

Thank you for allowing me to step in to make a brief statement.

I’m heartened by the attention this issue is receiving. CBD has shown tremendous promise in reducing the devastating effects of epilepsy. It offers hope to thousands of children nationwide who each day endure terrifying, uncontrollable seizures. It offers hope as well to parents who must endure the repeated agony of helplessly watching as their children suffer seizure after seizure after seizure.

Ask Paige Figi, whose eight-year-old daughter suffered as many as 300 grand mal seizures per week before starting treatment with CBD, and she will tell you that CBD is a lifesaver. After Charlotte started taking CBD, her seizures dropped dramatically. She now suffers, on average, less than three seizures per month and is able to engage in normal childhood activities.

Now, I understand the desire for caution. We’re Congress. We act slowly. But we must remember that these are people’s lives we’re dealing with. These are people for whom a five- or ten-year delay is not an inconvenience, but a potential death sentence.

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CARERS Act Public Statement

Realm of Caring is encouraged by the support of Senators Booker, Paul, and Gillibrand in the introduction of the CARERS Act, and commend them for recognizing the desperate need for access for families and caregivers across the country to therapeutic hemp oil. We hope that this piece of their bill can continue to advance expeditiously so that those in need do not have to wait for yet another Congress to pass before caring for their loved ones. This is not a tomorrow problem. It is a today problem.

Read the bill
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Compassionate Access Act Public Statement

Realm of Caring is thrilled to hear about another bill in the U.S. Congress which would increase access to potentially life saving cannabis therapies. On April 14th, Representatives Morgan Griffith (R-VA) and Earl Blumenauer (D-OR) introduced the Compassionate Access Act to reschedule marijuana and cannabidiol (CBD).

As Griffith stated, "it is time to research this further." The current schedule of marijuana, including CBD derived from marijuana, states it has no medicinal benefits. The Realm of Caring opposes this scheduling and states that cannabinoids have legitimate, positive effects, and, for some, cannabinoid therapies are the only form of care that relieves their symptoms. Children and adults across the country suffer needlessly because they lack access, and it is passed time for this to end.

Contact your lawmakers and tell them why increased access is important to you. Let your voice be heard!

Find your Senators' and Representative's contact information here.

View the press release and read the full bill here.

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The bill proposes to exclude industrial hemp and cannabidiol (CBD) from the definition of marijuana, ensuring that children and individuals with epilepsy and other debilitating seizure disorders have access to life-changing Cannabidiol (CBD) Oil and therapeutic hemp such as the Charlotte's Web™ brand of hemp products. High CBD hemp strains have provided relief for thousands of people in the United States as it's shown to reduce the amount and duration of seizures in children suffering from epilepsy and other seizure disorders.

Through cross breeding hemp varieties and landrace strains of cannabis, the Stanley brothers of Colorado developed a rare new strain of hemp that is marketed under the Charlotte's Web™ brand. Charlotte's Web™ products help create a better quality of life for patients of all ages affected by diseases such as cancer, multiple sclerosis, HIV/AIDS, Parkinson's and other debilitating conditions.

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