Sunday, May 22, 2011


Some of you may remember my visit to the Jack Hadley History Museum and my recent gown donation for one of their exhibits.  They've just let me know that they're partnering with other Blue Star Museums and offering free admittance to military personnel and families.  That's news worth sharing!!

Visit their site for further information!

Friday, May 13, 2011


So pleased to announce that we're putting out a call for submissions and we think it's going to be great -- for our readers and our authors as they share their stories. 

here's the info but it's also posted here:

Book Title – To Be Determined
Call for Submissions:

Editors: Nola Summers & Jordan Huff

Deadline for submissions is October 31, 2011

Please note: Publisher has final right of refusal on all submissions.

This is a not-for-profit publication with any sales revenue generated donated to Rare Disease Awareness causes and research. There is no payment if your story is selected for inclusion.

This is a book about living with Rare Disease. The collected stories speak to life from the hospital rooms to the living rooms of those affected by a rare disease diagnosis. It is a book of sharing between families and the bond of experience that is created with circumstances that only those involved can truly understand. The personal accounts included may inspire you, touch you, or give you strength but most importantly they will let you know that you are not walking this road alone...someone else out there does know what it’s like to have rare disease as a part of their family.

With forwards by Stephanie Hunt & Jordan Huff
Desired themes include but are not limited to:


Bringing Baby Home

Family Impact

Hopes & Dreams

Return Hospital Visits and Support


Living with (from the viewpoint of the person affected)

Living with (from the viewpoint of others)

Parent of

Sibling of

Grandparent of

Friend of

Child of

Paste your story submissions into an email and send to:

Attachments will be deleted
You may submit up to 2 stories

You do not have to be a “writer” to submit. If your story is accepted we will work with you to edit and ready your submission for inclusion.

Stories must be non-fiction, ranging in length between 300-1200 words.

No anonymous, author unknown or "as told to" submissions. On acceptance and on publication, if you wish to not include identifiers, names may be changed and you as the storyteller can be identified by first name only or as “name withheld”.

You must include your name, mailing address and main contact email address with your submission as release forms must be returned in order for your piece to be included in the book.

Publisher retains one-time publishing rights.

Please only use the (email) address for correspondence about this book. Emailing at a different address, Tweeting or Facebook messages will get lost.

Be sure to keep a copy of the stories that you submit to us as we will be able to acknowledge receipt of your submission but will not be able to send you a return copy or keep on file those stories not accepted for publication.
This book may be available in print and Epub.

Tuesday, May 10, 2011


I just have to share this -- it's wonderful news!!

I just got word that the RTS research project with Dr. Didier Lacombe has been approved for public funding in France to the tune of $640,000 (450,000 euro)! This is in addition to the $380,000 raised privately in 2010 and 2011 (of which $100,000 came from the Wesley T. Helmbrecht RTS Foundation and C$30,000 came from RTS Canada), bringing the total to over $1,000,000 (720,000 euro), the amount needed to finance the project.

The project will consist of a 1 year clinical trial that we hope will begin within the year.

So much can happen when so many work together!



The Michigan Women's International Show was Fab!

Thousands of Women came out for the 4 Day Event that focused on what being a Woman in today’s world entails. We are multi-faceted, multi-talented and our collective interests...are multi-dimensional! The Girl Power in the convention center was exactly that—powerful!

Mom’s Mini Pageant for entry to the Ms. Michigan World International Pageant was a hit. Director Mary Hodge (Mom:) crowned Cindy Burke as the winner of the event. Cindy has chosen to represent Oakland County in the State Final this October. She received a free entry into the Ms. Michigan World International Pageant and a gift certificate from the Taj Cottage.

I'd like to thank Mr. Chris Wilmer of American Ego for allowing us the opportunity to work with him, and for helping us to land an interview with Lifetime Television’s The Balancing Act. I was able to put out the word on Rare Disease, NORD and mainly The Ms. World International Adopt-a-Bear Program. Bringing a fuzzy friend to an ill child in hospital is something we can all support and I was happy to be able to share this. We are very proud of our program at MWI. The very unique aspect about Adopt-a-Bear is that our next queen will be able to take this charity and raise money for her cause throughout her reign; this is something that truly sets us apart from other systems in the industry. We embrace our Queen’s platform, by not only promoting, educating and informing, but also helping to fund it in some way.

The air date for the interview is June 1st -- hope you can make it.