Tags

, ,

It has been a week since I first learned of the clinical study in LEMS disease. I am waiting and hoping to hear something soon. Although I don’t like the wait, this is teaching me to be more patient with myself and others. Patience is not actually my virtue. From what I understand by talking to the program director, I will be placed on amifampridine phosphate (Firdapse) before entering the study. There is more information that explains LEMS and the drug administration at https://globalgenes.org/raredaily/introducing-the-first-4-lems-study/

This gal learned something (not so new) today. Let’s just say it taught me a good life lesson. I’ve learned not to sign anything – contract and all – unless you read the dotted line (between the lines). Something I thought I was too smart to avoid, but it taught me not to assume anything beforehand.

Nonetheless, I am still looking for a marketer again to market my books online. There are many scams out there and “get-rich quick” schemes. Authors are scammed, not to say I was scammed. But I rely on my intuition to determine if I’m making the right decision. I’ve learned over the years to trust that “gut” feeling. I am getting tired of promises made and no results (or increase in book sales).

I’ve had several publishers call me in the last few months, each one with wonderful things to say. But that is just it, they are just statements to get one’s money. All I want to say is Authors Beware – research the publisher beforehand and look at what other authors have to say about the company or organization. Positive feedback is important.

There are good publishing and marketing companies. It takes time to find them, but there are reputable ones. Do your homework beforehand. Ask around – networking with friends and word of mouth is the best way. My uncle and friend recommended a publisher they had worked with in the past.

Other than that, I will shut up for now. I hope everyone has a good and blessed weekend. I will keep you updated on study. Hopefully, I will be a candidate for the LEMS study very soon. I’ve seen few studies on LEMS and the research shows less than 2% of the population are diagnosed. There could be more of those not diagnosed or not documented cases.