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Zaki Celebrates Three Years Seizure Freedom

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

Seven Reason Why Run For The Realm Will Be Epic

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!

Why everyone is talking about baseCAMP

Today we announce the launch of the Cannabinoid Advancement Management Portal, A.K.A baseCAMP. Just as a basecamp is the headquarter of any expedition, Realm of Caring baseCAMP is the go-to online resource for cannabinoid data and research. It is the portal to the future, containing up-to-date information on the research results, opportunities and resources available. Currently included in baseCAMP is the RoC ORR abstracts as well as an SEC application to conduct research; coming soon is the ability to file for IRB approval for such studies.

Formally the “ORR,” or Observational Research Registry, baseCAMP allows clients the opportunity to enroll in research via an Institutional Review Board (IRB) approved study. The ORR is the largest registry studying epilepsy, with over 700 participants. We are pleased to announce the inclusion of the General ORR which is expanded to enroll those with cancer, autoimmune disorders, pain disorders and mental and behavioral disorders, giving us the ability to follow all participants in their therapies. If you have a question about how to enroll or regarding your specific diagnosis, please feel free to contact one of our Care Specialists at 719-347-5400.

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