Less than 24 hours remaining, 95 backers, 120% funded!

I never imagined I would be content with 24 hours to go on kickstarter. I thought I would be begging, pleading, crying, praying. Calmly, I watch the hours disappear, my heart full of gratitude. Thank you all for believing in me and the The Gene Guillotine. The project will end tonight, Tuesday at 11:11pm PST(2:11am early Wednesday EST). If you want the special rewards offered on kickstarter, this is your last chance. Preorder a book and have it shipped to you one week before it is released to the public or dine at New Sammy’s Cowboy Bistro, I will be your primary waitress and personally give you a copy of the book.

I’m still frantic in the publishing process, setting up a company, picking a publishing name, proofing the cover design, and figuring out the printer. This morning at 8:00 exactly, after only 3 hours of sleep, I emailed numerous documents to Amberly Finarelli, my editor, to be sure they were book-ready: the text for the back cover, the bio, the page on gene etiquette, and the introduction.

I felt like I was in college, pulling an all-nighter, rushing to get the paper in before the deadline. We reviewed everything this afternoon and to my disbelief and relief, she liked the introduction. I was shocked. My previous introduction was tight, concise and after years of editing I knew it nearly word for word. However, the “laundry list” of what the book contained wasn’t an effective intro. I had to start over. My new introduction is— new, and being such it is hard to look at it with appreciation. I need a month for it to mature on the shelf to adequately decide for myself, a month that I do not have.

Amberly, suggested maybe I have the “writer’s fatigue.” Is this the phrase for the sensation of body exhaustion and mental burnout I’ve been feeling for a month?

The biggest change Amberly suggested is to rewrite the bio and the back cover in third person. I’ve been rebelling against this since I wrote my first bio 8 years ago. Everyone knows that most authors write that text, why should it be in third person? It’s a facade, and I prefer the personal touch.

Amberly reminded me it was ultimately my decision, but being my editor she has to alert me to the norms. She said if I left the bio in first person it would be like coming to a stoplight that has a purple light where the green light normally resides. Everyone especially avid readers are used to things being a certain way. Reading my bio in the first person wouldn’t necessarily be negative but it would give pause.

I will change it, mostly because I want my book to look as professional as possible and less like a cobbled together self-published scrapbook. I’ve spent too much time on it to buck the system in ways that hurt the portrayal of this book.

A glimmer of relief is in my soul, a sense that I will soon be done.

Happy New Year!

It’s announced! * Jan. 29th 2011 *
Save the date to watch CNN’s early-onset Alzheimer’s documentary “Filling The Blank.”

Click here (right side-“On the next episode” of World’s Untold Stories) to view a beautiful picture of Colombia, where many families are active participants in an early-onset Alzheimer’s research study and doctors are committed to finding treatment or a cure for Alzheimer’s disease. My extended family and I were interviewed as part of this documentary.

Additionally, there are only 11 days left to preorder The Gene Guillotine on kickstarter.

Despite being on family vacation, I have continued to prepare for the publication of this book . My family has continued to support my efforts and for that, I am grateful. Now, I leave the computer and join them for a bonfire.

I hope you have a safe and happy new year.

105% and First Publicity!

Yippee! Jeanne was the Kickstarter backer who put this project over 100% and 6 more people have backed since then. I think I am still in shock. It hasn’t really sunk in. Thank you everyone! You can support and preorder The Gene Guillotine at

I was buying groceries at Safeway when Andy checked his blackberry and said, “100%.”
I stopped swiping my credit card mid-swipe and said, “No way?!? Already?”
He showed me the page.
My eyes popped, “Really?”
“I told you people believe in this project.”

I promptly dialed my siblings to tell them the news. Then celebrated with two family members over a hot mug of Candy Cane tea and freshly baked chocolate chip cookies.

Shelly Pike from North Country Public Radio posted a blog that mentions this book. Thank you Shelly! North Country Public Radio is located in Canton, New York where Shelly and I met at St. Lawrence University. This is the first publicity on my book!


The Gene Guillotine is 77% funded on Kickstarter, only 2 weeks into this project and 23 days to go!

This is totally amazing. Thank you everyone for backing me!


Late last night the front page of the New York Times featured an article titled “Early Tests for Alzheimer’s Pose Diagnosis Dilemma.” The title of the article now appears to be “Tests Detect Alzheimer’s Risks, but Should Patients Be Told?” The comment I submitted to NYT regarding that article is #45.

My goal is to connect with others who are impacted by Alzheimer’s or a genetic disease.

Excitement & Fear

All the excitement is true,
And I’m also fragile.
Hope is heavy and fear creeps up.
This fear-excitement edge.
What am I doing being so open? Even if this seems to be my mission in life,
I don’t have to choose it. I could do anything else.

I hibernate, a mini one… an ostrich’s head buried in the sand, while my body (my website and kickstarter) are prominent displays of my book. I have heard that excitement and fear have the same physical manifestations.

I hesitate to reveal this–I’m supposed to be professional now, showing only confidence and courage.
My crying eyes must be from my “excitement” right? Another tear, another excitement?

Will you feel when you read my book? It’s my story, loaded with my past and triggers instant tears in me, but will it matter to you? It”s the cost-benefit analysis that has no easy answers. Is this ‘stripping’ worth it?

Tenderly, I hold my heart and head, as I continue onward, taking the next most logical step.

I’m honored to have your support.

Want to do more? Here are ways you can support this book:
*Go to kickstarter and become a backer of my project.
*Sign-up for updates on my website.
*Forward this as an email to everyone in your address book.
*Add links on your facebook or twitter account to my website and my kickstarter webpage.
* Watch the CNN 2011 documentary on Alzheimer’s disease. (Date to be determined.)


Blast off! I hit the launch button today. My project is LIVE.

You can support and preorder The Gene Guillotine: An Early-Onset Alzheimer’s Memoir today or any day until 1/11/11 at 11:11pm. (Easy to remember.)

Visit this link and be the first to support my book!

I’m hoping to have my book published and ready to go before CNN airs their documentary on Early-Onset Alzheimer’s disease. CNN interviewed me as part of the documentary. (Can you believe it? CNN came to my home to interview me! I’m still shocked.)

Thank you for your amazing support and energy for this book.

Kickstarter accepted my project

Kickstarter accepted my project!!! I’m so excited.  The butterflies got bumped.  I’ve got elephants jumping in my solar plexus! Yahoo! I can’t believe it….no, I can believe it, but it’s another step, someone else believes in this project too… a total stranger!

Now, I have to finish the text and tier levels.  I’m hoping to have this project up tonight because it is November 23rd, the anniversary of my mom’s death.

Back from Los Angeles

Cruising on a 1950 red Schwinn, I biked over the gold Hollywood stars that glistened in the sidewalk with a warm wind in my hair. This was my surreal journey from sleeping at Eliza’s home to the filming of the video.

The film producer generously donated time, energy and talent to create a professional video. I feel so lucky. Currently, I’m working on the text description and tier donation/gift levels for the kickstarter website. My project should be LIVE this week.

After asking friends, family, coworkers and seatmates on airplanes, the choice for the new book cover is down to the final two. The current book cover of the Oregon coast, although appropriate and metaphoric, didn’t withstand the “eye-catchy” category.

Joel Friedlander who is formatting The Gene Guillotine is preparing another sample page layout before we finalize the interior book design and move ahead.

Filming Video

I’m in Los Angeles, putting together a video for It is a website that encourages artists and authors in their creative pursuits by featuring and raising money to fund their projects.

In order to have my book, The Gene Guillotine: An Early-Onset Alzheimer’s Memoir, ready for purchase in early January, I need to raise money for production costs and printing. If I raise beyond the goal amount necessary for paperback and ebook publication, I hope to have the book translated into Spanish.

CNN will be airing a documentary on Early-Onset Alzheimer’s Disease in 2011. This CNN special is about Alzheimer’s research that is taking place in Colombia in a town that is severely affected by Early-Onset Alzheimer’s disease. It also shows Early-Onset Alzheimer’s in the United States. My family and I have been interviewed for this documentary. CNN’s filming has intensified the urgency to have my book published as soon as possible and opened my eyes to a Spanish translation.

Additionally, I have received my edited manuscript and have a few minor changes before formatting the book.

Next Step

It’s the next step!!!!

I’ve sent my revised book, The Gene Guillotine, to Amberly, my editor! I’ve been working intensely on this round of editing since Monday, blocking out all activity except for work, a shower, and watching about 4 hours of the 33 miners being rescued in Chile! 2-5 hours of sleep per night, frozen pocket sandwiches, English muffins, bananas, chocolate, a box of tissues, a quart of coffee, and gallons of tea have sustained me.

Immediately after hitting ‘SEND’ I call Andy, one of my core supporters:
“Congratulations! Are you opening a bottle of champagne?”
“No, it’s not really done yet. I feel like I have to wait until it’s totally done before I celebrate.”
“Celebrate each step. And if that means drinking a lot of champagne, so be it.”
I laugh, “I’m scared too. It doesn’t feel ‘good enough’, there are always more changes to make, and I have to get this book out of my hands! I’m shaking and I feel like I’m going to throw up. My body is cold, but my armpits are drenched.”
“You have been through stuff harder than this.”
I think of my dad’s death, my mom’s death and Alzheimer’s, “Yes, but not that I have initiated.”
“What are you worried about?”
“The book reveals my mental and emotional process in intimate detail. It’s scary to be that vulnerable, that honest. I don’ know of any other books that are this open, but that’s probably because I mostly read self-help books.”
“That is what will make people want to read your book. People love that stuff, they love seeing people who are more messed up than them.”
“Yeah, that is probably true. When I think about your Dad with cancer and all he has had to endure, it makes it easier for me to think about my life. I wouldn’t be so worried if I knew the repercussions this book will have on my life and my family 6 months or even two years from now.”

I’m ready to get back to running and eating real food; I have a marathon in 3 weeks. While I’m waiting for the return of my manuscript, I will decide about book covers and book formatting. But first, I will have a glass of champagne when I get off work.


The Gene Guillotine: A Memoir of Early-Onset Alzheimer’s is not available yet.

I am currently working on another round of revisions. Lisa Alpine has been my fabulous book coach and editor for years. She knows the story, has met my family, and has edited each chapter numerous times. In additional to Lisa, I recently hired Amberly Finarelli as a final editor to read the book with fresh eyes. I wanted someone who didn’t know the story, the history, or my family.

Amberly has made great suggestions to add background information and expand on my feelings in different chapters. I am implementing these changes and making clarification in the book. Producing the final copy with the new edits is intimidating, because I want it perfect—which I know is not possible. Still, it feels good to know my book will be clearer, cleaner and stronger.

While editing, I have mini panic attacks about emotionally stripping in front of everyone! Last month, I had numerous nightmares that I lost Mom in a huge snowstorm with snowbanks taller than the snowplows. To complete the edits, I try to ignore the end result and keep putting one foot/word in front of the other.

Joel Friedlander will be working with me on formatting the book’s interior and Lucas Balzer on the book cover, after which it goes to the printer for a few sample copies to review. Then, after making some changes it’s back to the printer to produce books for sale!!!


Upon printing my book, I will sell copies from my website or have links to where you can buy The Gene Guillotine: A Memoir of Early-Onset Alzheimer’s.

I welcome your support, suggestions and comments.