Ive been very quiet on here lately, and I apologize. There have been a couple of reasons for that. We have been busy, but the main reason is I have been unsure of what to post. A big part of our life lately has been traveling to New York City for a clinical trial that Kendle was accepted into. It is for a medical cannabis strain called Epidiolex and it is pharmaceutical grade. We have received conflicting information about what we can share, but my final understanding is that I am able to share with you that we are participating in a compassionate use trial, but I cant publicly post many details of how she responds to it. As of right now, we are traveling to NYU every two weeks and, after our next visit on Feb 5th, our visits will become monthly. They will stay monthly for 4-5 months, or until her dosage remains consistent, and then we will travel every 3 months. So, its been hectic, but we are thankful for this opportunity and that my dad is able to stay with Annie Lynn and Kimber while we travel with Kendle. We have been taking day trips which equals about 22 hours of travel. During our first trip, my parents were out of town, so we had Kendle AND Kimber while Annie Lynn stayed with a friend. While we were lucky that both girls handled the travel well, it was EXHAUSTING taking 2 girls to the big city with all of our equipment. Traveling with just one is much much easier! I also wanted to share the other big news that has been going on: the new Georgia House bill for medical cannabis oil, HB1, was dropped on the State House floor today! This means that it is officially being considered for law. We are hopeful that it will be assigned to a House committee tomorrow and will move quickly through both chambers so the governor can sign it into law very very soon. Many of you might have heard that this bill has been gutted and is dead. It is true that it has been changed, and I think all of us who have been supporting Georgia’s medical cannabis efforts were very disappointed that in-state cultivation was removed. It was actually quite a shock to many of us that cultivation was not going to be considered even before the legislative session started, but I am learning to not be shocked by anything in politics anymore. However, even without in-state cultivation, HB1 is a very important bill and a giant step forward for our state. I will explain why. In the near future, and I mean within weeks, a company in Colorado is planning to begin shipping Charlottes Web oil. Yet, they will only ship to states that have immunity laws in place. If Georgia does not pass HB1, this will not be an option for our residents. The other thing that I am excited about is that for an immunity bill, this is the best I know of in the country. It currently allows for 17 diagnoses and several different strains - which is important because different strains are effective for different symptoms. Many people have called the Georgias Hopegroup selfish because we are only fighting for our children. This is not entirely true - we are advocating for as many people as we can help, yet we can speak best to epilepsy because it is our own personal experience. There is a chance that this bill will be changed in committee and some of the diagnoses will be removed. If you are affected by any of the diagnoses listed in HB1 (Cancer, Glaucoma, AIDS, ALS, Seizure disorders, Multiple sclerosis, Crohns disease, Mitochondrial disease, Alzheimers disease, Muscle spasticity disorder, Fibromyalgia, Parkinsons disease, PTSD, Autism, Sickle cell anemia, Tourette syndrome or Terminal illness), I encourage you to contact your legislators, attend committee meetings and visit the law makers on the ropes so they can hear your story. We have found that 90% of the time, you will find an open heart if you approach them in a professional and courteous manner. I should also share that Kendle and my dad had the honor of presenting HB1 on the House floor today!! Its taken 36 years, but for the first time in my life I HATED being short bc I had NO IDEA they had this opportunity until I got home and saw pictures on facebook!! Such an amazing moment for the two of them and we were so honored to stand by State Representative Allen Peake today! Attached is a picture of Kendle and Papa Kutch presenting the bill along with a few more pictures from today! As always, thank you for checking in on Kendle and I will continue to update as HB1 moves through committees! For all of the Georgia residents, PLEASE make sure that you contact your state representative and state senators asking for their support of HB1!!
Posted on: Tue, 27 Jan 2015 04:09:59 +0000
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