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WHOO HOO!! RoC is 5, let's party! Learn more about why we do what we do, our current projects, and plans for the next 5 years. We currently serve more than 50,000 clients worldwide and there is no way we would exist without you. Stop by and celebrate with us, first 50 guests get a goodie bag! #KindofaBigDeal #BirthdayParty #Celebrate #HighImpactNonprofit

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Collaborative research study shows consumers should evaluate their products closely to ensure they receive the highest quality CBD hemp products; all CBD hemp-based products are clearly not the same.

COLORADO SPRINGS – November 07, 2017A recent study published in the Journal of the American Medical Association (JAMA) by the University of Pennsylvania Perelman School of Medicine, Veterans Affairs Palo Alto Health Care System in conjunction with Johns Hopkins University School of Medicine shows high CBD products’ contents often vary wildly from the manufacturers’ claims.

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UPDATE: Comment deadline extended to September 20. Now's your chance to speak up!

Hello Families,

The FDA is taking comments on Cannabidiol (CBD). We are asking you to make a comment supporting CBD not being subject to international restrictions.

We know many of you have an amazing story in regards to the benefits of CBD with you or your loved ones' health. However, the FDA is not looking for your testimony. In fact, such statements may backfire; the FDA may view those stories as Claims, supporting their belief CBD should exist as a drug only.

This, of course, would affect access for thousands. Because so many of us have limited options already, the last thing we need is more restrictions on a non-toxic, non-addictive compound.

PLEASE only make comments in regards to SAFETY, and how CBD has NO ABUSE POTENTIAL.

Go to www.saveourcbd.com to see the directions and make a comment. They offer suggestions for comment content, but please make your comment original. Also, submitting peer-reviewed research will help to legitimize your comment in the eyes of the FDA.

Make Your Voice Heard!

Quick tech note: Google Chrome doesn't work correctly on the FDA's website. Safari, Firefox, Internet Explorer are all browsers that work correctly.

Share with your friends! We have strength in numbers!

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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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1.We provide great shirts, and encourage dressing up

Arrive in spandex tights festive in leaves and you will not be alone my friend. Don’t wear your best tutu if you want to participate in the color fun, which leads to reason two.

2. Neon paint available, and neon is always fun

Yes we know, color runs are really trendy right now so we are jumping on this flashy bandwagon. Brightly colored paint will be available to get drenched in neon. Bring your goggles, bandanas and stroller covers!

3. Have FUN, and FUND research

What other occasion will your team directly impact sorely needed research? Running is research, let’s do this!

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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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My teeny tiny federal perspective…

Flying over the US, seeing no boundaries or walls of separation between states, as it should be… on my way to drop the Federal Senate Companion Bill (S.1333). I cannot help but get excited and a little nervous.

I arrive and meet with a few families for dinner the night before the big day and press conference. We revel in what our lives have become. We experience the overwhelming sensations that not only are we in over our heads, but that we actually have the power, the will, and the heart to get this done!

The Federal Senate Companion Bill opened and was authored by Senator Orrin Hatch and has 6 co-sponsors. Senator Hatch was the father of the Dietary Supplement Health and Education Act (DSHEA) so we could not have asked for a better person to put the pen to paper. The companion House Bill (H.R. 1635), Charlotte's Web Medical Access Act of 2015, dropped in March and already has 34 co-sponsors.

These efforts are meant to deschedule both CBD (cannabidiol) and hemp (cannabis with < 0.3% THC). This will correct outdated and antiquated regulations; this will open up safer access, allow for research and will designate parents as caretakers-- not criminals.

The sense of urgency is overwhelming. After being there, and seeing how quickly things are moving I am enthusiastic that this bill will pass. And not only that it will pass, but that can happen this year! Do not be misled, however… it will not happen without your help. I cannot stress how many times while in D.C. I heard,

“...But I need to hear from my constituents on this matter...”

That is you. Yes, you have the power to make history. #FightForAccess

With you in the fight,
- Heather Jackson

Join the Fight!

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