Friedreich’s Ataxia

Because so much work is being done behind the scenes and it occupies so much of my time, I will likely be blogging often on this subject. So, for anyone interested, and for myself as a bookmark for info, here is a list of links to more information about FA and the Literary Collaboration. Enjoy! :)


See: http://www.babelfamily.org/en/latestataxianews/808-international-literary-project-against-friedreichs-ataxia-invitation-to-writers-associations-and-fa-patients

# 2 – ENG: Video – Dr. Lufino’s talk for BabelFAmily about gene therapy for Friedreich’s ataxia

Transcription by Kristin Kamm and Claudia Guiraldes / Subtitles by Hasan Çiçek

Click CC on the player to select the subtitle in your language

See: http://www.babelfamily.org/en/latestataxianews/809-video-dr-lufinos-talk-for-babelfamily-about-gene-therapy-for-friedreichs-ataxia

# 3 – ENG: Reviews – The Dandelion Diary: the tricky art of walking, by Marguerite Black

See: http://www.babelfamily.org/en/latestataxianews/805-the-dandelion-diary-the-tricky-art-of-walking-by-marguerite-black

# 4 – ENG: Patent application publication – Methods and compositions for mitochondrial replacement therapy

See: http://www.babelfamily.org/en/latestataxianews/807-patent-application-publication-methods-and-compositions-for-mitochondrial-replacement-therapy

# 5 – ENG: A Cocktail of antioxidants as a new therapy against a neurodegenerative disease

See: http://www.babelfamily.org/en/latestataxianews/810-a-cocktail-of-antioxidants-as-a-new-therapy-against-a-neurodegenerative-disease

# 6 – ENG: Open-access article – Mammalian Frataxin: An Essential Function for Cellular Viability through an Interaction with a Preformed ISCU/NFS1/ISD11 Iron-Sulfur Assembly Complex

See: http://www.babelfamily.org/en/latestataxianews/806-open-access-article-mammalian-frataxin-an-essential-function-for-cellular-viability-through-an-interaction-with-a-preformed-iscunfs1isd11-iron-sulfur-assembly-complex

Writing Resources

Sometimes I get so overwhelmed with, well, the thoughts in my head are one LOL, but with the offerings available in the world. So many things I want to learn and do but couldn’t possibly live long enough to accomplish.

Another thing is all the resources available to writers. We check out the local library, scan shelves that offer maybe a book or two only, then don’t go back for that purpose for a long time and don’t see if they’ve upgraded and gotten better. The same with many bookstores. I’ve picked a favorite and ignored the rest for so long, then been blindsided with how much they’ve upgraded.

One of the resources I hadn’t tried in a long time is my writing chapter. And wow, it has some good stuff. I own all the requisites, Stephen King, Donald Maass, Dwight V. Swain and several others. Now I get to check out a few others I’ve seen around, or not, and haven’t thoroughly examined.

Much as I prefer to do this with a highlighter a page or five at a time, can’t do that with library books. C’est la vie!

The ones I am holding now are:

Blueprint for Writing: A Writer’s Guide to Creativity, Craft and Career by Rachel Friedman Ballon

Writing Alone and With Others by Pat Schneider

Writing the Second Act: Building Conflict and Tension in Your Film Script by Michael Halperin

Write. 10 Days to Overcome Writer’s Block. Period. by Karen E. Peterson, Ph.D.

Crumbs in the Keyboard: Stories From Courageous Women Who Juggle Life and Writing by many, many authors benefiting The Center for Women and Families

I miss my highlighter already. :)

Valentine’s Day

I was just informed that taking kids on a Valentine’s date is “Eww”. Who told me this? A teenager. And now I am kinda blown away. When did this happen?

I have gotten used to being Mom. I have spent so many Valentine and Anniversary dates with my kids. We go out for a family date with dinner, a movie, and a trip to the bookstore where everyone gets at least one book. When did they get too old for that?

Does this bother me? Not exactly. It’s a wonderful thing to spend my time on double dates with friends and, always, alone with my husband. But it’s so strange. I know there comes a time when they grow up and move out. I have a couple more years for that, though. But now, the girls are not dating anyone and yet, they don’t want to go on dates with mom and dad. Not even for the chance to go to a movie or a book. And I’m just flabberghasted.

You mean it’s time it’s time to grow up and move on to the next level of parenting already? Am I ready for this?

International Friedreich’s Ataxia Collaboration

[show_avatar email=email hidden; JavaScript is required align=left avatar_size=87] This has to be the most ambitious, challenging idea I have ever participated in. At this time, we have 7 authors from 4 different countries who speak 3 different languages: Portuguese, Spanish and English. We are writing a novel featuring at least one character with FA with the hopes of generating money for research.

There are several drugs finally in trials or just out of them that may slow or halt the progression of FA! This is so incredible. A few years ago I was searching for a neurologist in the hopes they could tell me more about the latest findings than what I could find on my own. At this time there was no medicine or therapy, only at long last, after years of development and research, a definitive blood test stating whether or not a patient had it.

I wanted to know more. One of the potential doctors actually said to me, “Yep. Hasn’t changed in a hundred years. What do you want to know?”

Um. Nothing from you, thanks.

But now we are way beyond even that. There are possible drugs to halt the progression. Nothing like being told at 19 to eat right, exercise and keep a positive attitude. No matter what, this disease will slowly drag you down, but these things might slow the progress.

With a drug to give us the protein our bodies are missing, we could finally produce the energy we need to maintain the therapies and activities that will keep us strong and functioning. At least, that is the hope.

So, now the writers among us are gathering to fight a disease that knows no age limit, it kills from childhood to adulthood. It knows every race, every language, every gender and sexual preference. Lucky me, it’s the disease that believes in equality. LOL

Wish us luck!

Latest and Greatest

You know how time does that really fast flying thing right when you’re busy? Not necessarily when you are having fun, but right at those moments when you wish there were 25 hours in a day? At least, until you remember you’d probably overfill that extra hour also and then you’d be wishing for 26. Human nature, I guess.

The proposal for Damned has been submitted. Let’s pray my editor loves it. :)

The revisions and copy edits for Cursed are finished! Woohoo! Those arrived and a week and a half was dedicated to those.
Next will come the page proofs, then the writing half of the work for Cursed will be completely done. Soon, I will be submitting files for reviews and quotes.

Wow, I feel accomplished today. :)

Also, I have finished examining the workshop itineraries for RWA National in San Francisco. Plans have been finalized and I will be in two signings at National. The Literacy Autographing, on Wednesday, July 30, for all proceeds to benefit literacy and a Tor publisher signing on Saturday. I can’t wait to be a part of these. Come on buy and get your own autographed copy of Betrayed!

Hope you’re having a great summer!


Today I created a new layout for my Bebo account. www.JamieLeighHansen.bebo.com It looks so beautiful! I’m feeling incredibly productive. :) I like playing with graphics.

We are updated!!!!

It took about 11 hours yesterday and a couple today, but every page has received an update and is in full working order (I hope). I have also added to the Scriptorium the cover, back blurb and a link to the prologue and first chapter of Cursed! I hope you enjoy. :) Please feel free to comment if you want to discuss the excerpt or pretty much anything. :)

Damned Writing Progress:

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12990 / 110,000

New Cover for Cursed!!

We have a cover and a release date! Woohoo! I am so excited. And currently adding new info all over the website, so stay tuned. In the mean time, what do you think? I wish I knew who this model was. The man has gorgeous eyes!

December 2, 2008



Lewis & Clark Alumni

First, history: growing up, I went to 15 schools. 5 elementary, 5 jr high, 5 high school. I wish a parent in the military was the excuse, but no. I never stayed at one school for more than one year. Twice were 3 schools in one year. Then I stopped at the last high school and announced, that was it. I had 2 years left and I wasn’t freaking budging. I didn’t care who was pissed about it.

So my last 2 years were the longest I’d ever stayed at any one school. Today, while doing research for my next book (because the series is based in Spokane) I went to my old high school’s website and alumni, hoping to find a few uniform pics. Here’s what I found:


I am still teary eyed. I belong somewhere. And, I’m distinguished.

PS: Writing news! The proposal for Damned is complete, being polished and ready to mail tomorrow! Yippee!

Emo kids…

My daughter informs me emo guys are the hottest. Scary. Not because they aren’t hot (dramatic looking with the hair dye, makeup and piercings), but because emo apparently combines goth looks with depression and cutting. Cutting. Seriously. Do these kids even realize the kind of diseases they can give themselves? Maybe along with Aids classes they should give kids a talk about things closer to home. Depression and the self-damaging things it can cause, like cutting.

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10642 / 110,000