Update on LEMS Study

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I went to Augusta, GA last week and met with the neurologist, Dr. Rivner, at the Augusta University Medical Center. He examined me and did an initial screening. I was approved for the study and sent for lab tests. I will have to come back within a few weeks to be administered the drug. Too bad they couldn’t have done everything in one visit.

There are two cons to the new drug. It doesn’t replace monthly infusions and it isn’t a cure for the disease. I am praying in faith that I can at least reduce the frequency of infusions in the future. Once I am administered the drug, I will take it for a full month, then head to Miami for the study.

The drug is called Amifampridine Phosphate, used to prevent weakness in LEMS patients. From my understanding, there will be an experimental and a control group in the Miami study. One group will be administered the actual drug, while the other group will be given a placebo. No one will know which one they will be given in the study.

Please continue to send your prayers. This is the closest thing to a miracle I’ve found in over six years. Hopefully, it will make me feel stronger and have more endurance. I give much thanks to my sister, Susan, and her husband, Donny, for taking me and giving me transportation to and from Augusta.

 

Update – LEMS Study

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I’m on the way Tuesday night to Augusta, Georgia at the medical center. I have a scheduled appointment on Wednesday morning at 9:00 a.m. It will take several hours to drive down. My sister and brother-in-law are going with me. I will be initially screened, along with lab work. The doctor doing the research study in Augusta will see me at this time. I’m praying that this is the answer to long-awaited prayers. Please keep your fingers crossed and a “God Bless” for a good result.

I will come back to Augusta after lab results are completed. I will be placed on the new drug then. From there, I wait a full month and then head for Miami for the study.

Update on LEMS Study

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Today, I heard from the medical center that will be screening initially for the LEMS Study in Miami. Instead of Columbus, Ohio, I will be going to the Augusta Medical Center in Georgia. It is a lot closer and saves on traveling time. I will be able to drive it instead of taking air flights. I registered in their system this morning. The program director said she would call me within the next few weeks to schedule an appointment. From protocol, I will be screened first, then come back to medical center to be placed on the drug. I remain on the drug for a full month and then head to Miami for the study. It takes between 5 and 12 days, so I assume up to two weeks.

This is a good indication that I am approved already for the study. I will learn more as I continue through the screening process. I give God all the praise; He is so good. Thanks for all the prayers, encouragement, support and well-wishes going up in His name. Now, to have my health totally restored and my mobility much improved. Do you believe in miracles? I certainly do.

Newest Book Online

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My newest book, Saga of the Ages, is available online now. Please go to Amazon and Barnes & Noble websites for more information. This book is different from my other novels and totally exciting to read. Mystery, episonage, double spying, murder, romance and adventure are all entailed – it has something for everyone in mind. Centered around colonial times, Lisa Marie Chevalier plays the main character in this historical novel. Looks are deceiving. She looks like an angel on the outside, but a total devil on the inside. Read how her deepest demons come to life in the story. One of my best creations yet!

Newest Book Gone to Printers

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Saga of the Ages went to the printers today. It should be online in 10-15 days. Please keep checking Amazon and Barnes & Noble websites for release of book. Another book is created and born. It is literally a saga of the ages – a new birth.

Good News – All the Way Around

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I am going to Ohio State University Medical Facility for 1-2 days to be administered a new drug in the LEMS Study. A travel companion is being arranged by the pharmaceutical company. Also, the program director is contacting my Neurologist to get my medical records sent to Ohio. Afterwards, I will wait a month and travel to Miami. The clinical study takes up to two weeks. This is where I am with the clinical study. No dates are known at this time. As long as they are working on something, that gives me hope for the future. It has been a long medical journey.

On the lighter note, my newest book, Saga of the Ages, has been sent to the publishers last week. Covers have been approved. Just finished editing the final Galley proof. Hope to have that finalized this coming week. I sound like a broken record, but please check Amazon and Barnes & Noble websites within the next two weeks for publication.

We are expecting rain in Atlanta today. The temperature is right at 70 degrees, with an overcast. It is partly cloudy; however, thunderstorms are expected to hit later this afternoon. The sun is peeking in and out. Our yards were filled last week with fallen trees from the previous thunderstorm. The men cutting the trees hit a cable, knocking Internet out for three days. Gee, I actually survived three days without the television and phone line too.

Other than that, I hope everyone has a good weekend. Hug your spouse and children, as well as all of your loved ones. You never know how long one has on earth. Happy Father’s Day to all fathers, grandfathers and potential fathers!

 

 

 

Newest Book in Production Stage

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My newest book, Saga of the Ages, was sent to the publishers on Wednesday. It has passed the initial content evaluation assessment and now gone to creation. I want to have the original copy for final review by one week from now. If it’s not too much trouble, please keep you fingers crossed. I will keep you updated on progress.

 

New Author’s Website Established

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I have a new author’s website now. It is http://www.annermurray.com  Kudos to Kate at AuthorHouse Publishing for updating me today and helping me. For a list of books and ordering information, please go to website. I separated my first two books from my original author website under my pen name, Elizabeth A. Philips. They are still available at http://www.elizabethaphilips.com  I believe there will be less confusion now. My new book, Saga of the Ages, is in its final stages of reviewing. I will be submitting it to the publishers towards the end of next week.

LEMS Study

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I’m excited to announce that after six years, with my sister’s help, I have found a study primarily for those diagnosed with LEMS (Lambert Eaton Mysathenic Syndrome). The study takes place in either Miami or LA. The program manager contacted me today. He was not surprised I developed this disease from cancer. He seemed quite knowledgeable about the disease. He is trying to contact my neurologist at Emory.

There is one other option in August, GA. My sister Susan and her husband could drive me there. Also, I did find a friend in Miami who will drive with me from Ft. Lauderdale to Miami. My niece said she would drive me to the Atlanta airport. My sister Janice said she would also. Of course, a lot of prayers will be needed. It also depends if my doctor determines I am a candidate for the study.

I knew there was something out there that might help improve my quality of life or help others with this debilitating disease. I only wish it hadn’t have taken six years to find it. It is a new drug introduced that the FDA is trying to approve in the United States. It has already been approved in the European market.

I will see what develops in the next few days. Not sure at this stage when the study will begin, but I feel it will be soon. The program manager advised I will need to be placed on the drug first before the Miami study. Please keep your fingers crossed and prayers for a positive outcome. I pray this is the answer I’ve been looking for. Hopefully, it can replace my infusions one day.

No offenses were intended for friends or family members. I’m sorry if anyone was insulted with previous comments. This is an exciting moment, yet scary and emotional at the same time. Praise God for His goodness. If it is His will, the doors will open.

Publicist Needed

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I’m looking for an experienced publicist/marketer/advertiser for books in the Metro-Atlanta area. I prefer the local area, but would consider long distance. Please email with contact information.