Baby Grace is truly Amazing! She has post vaccine injuries, including seizures and a severe rash. She has been through so much after she received her vaccine, and what I mean by amazing is her strength is solid even with her setbacks. She will still have a smile that will steal your heart. We are confident that we will get her to being two! Even though she is unable to go outside unless we are going to hospital or appointment (the sun affects her skin).
CW has been the most promising help for our baby Grace thus far we are all so thankful I honestly have no idea what we would be doing at this point for Grace if we didn't have CW and RoC.
Her skin is night and day! We have not seen any seizures, skin is looking so much better she more active, more verbal communication, and she seems to be catching up to her milestones, blood work is improving. Her lab's just came back and they are the best they have been since she's been effected by her vaccine! We are so excited about this recovery we are seeing!
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
Observational Research Registry (ORR) 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.
Letter from the Executive Director
Spring is here, the birds are chirping, tulips are blooming, lives are improving, my son Zaki is approaching 30 months seizure free - and filling our fundraising cup is underway. This month’s newsletter is focused on our fundraising efforts and why they are so necessary to the continuance of our organization's ability to serve its mission. When we say that the Realm could not do it without you, we mean it. We receive no government funding of any sort. We are completely and wholly funded by individual donors and organizations like yourself. We do continue to apply for grants but what we do may be considered a little unprecedented, so we have not realized any funding through grants... yet. I hold hope in this area.
Coalition for Access Now drops new federal bill alongside Rep. Scott Perry
WASHINGTON, DC - Coalition for Access Now announced a new bill this morning that would allow those suffering from debilitating conditions to gain access to life-saving hemp oil therapies across the nation. Rep.Scott Perry (R-PA), families, and other lawmakers just introduced this bill with bipartisan support on the Hill.
MARK YOUR CALENDAR! 2015
We know not everyone will be able to participate in every event, so we wanted you to see what we have planned for the rest of the year.
June 7 - Dateline Segment Airs- 7:00 MST
August 21 - 2nd Annual Golf Tournament - Colorado Springs
October 10 - Run for the Realm, Family 5K - Colorado Springs
Volunteer Highlight : Deidre Smith
Volunteer of the Year 2014 | Hours given: 730
Q. What inspired you to volunteer for Realm of Caring (RoC)?
A. I saw what it was doing for the families and what a good cause it was. It was such a blessing to be involved with people that understood what I was going through with my daughter. I wanted to be able to help as many as I could with this opportunity.
Q. What do you do as a volunteer for RoC?
A. I help with promoting the organization with products such as embroidering the logo on shirts, bags and blankets, running the RoC store and creating products for fundraising events.
1 DAY LEFT: Reason #1 why you should donate to Raise the Realm: CharlottePhoto from Face of Cannabis
Meet Charlotte: As of Februrary 2015, Charlotte is 3 years 9..9% seizure free. While Charlotte used to struggle just to survive, suffering through 40+ grand mal seizures per day, she is now able to do many of the things that her twin sister can do. She has friends, rides horses, rock climbs, and even recently enjoyed a multi day family rafting trip along the Colorado river!
Why is the waitlist now called the access list? Because you no longer have to wait for Charlotte’s Web products. Colorado hemp cultivators and extractors have met the need for the 12,000 person waitlist that was created last year. The finished product exists for those who need it. Now it is purely a matter of access. Charlotte’s Web products are available to purchase in Colorado and California. Another 4,000 people received an email inviting them to order. The invite to order doesn’t mean only those 4,000 can order Charlotte’s Web Hemp Oil, it is just an announcement and a friendly reminder that product is available to them. All 12,000 who initially signed up waiting for Charlotte’s Web Hemp Oil will be contacted by the end of February. This is great news for the Realm of Caring team and the new clients that will be working with them. It is also going to be beneficial for the Observational Research Registry (ORR) that is an International Review Board (IRB) approved study. The next step is a matter of access, which falls under the purview of federal legalities and descheduling CBD as a Controlled Substance. The RoC is actively seeking relationships with federal advocacy groups to push the greater mission of national access to cannabinoid products.SUBSCRIBE TO OUR NEWSLETTER