Category: PKU Book Project

News, PKU Book Project

The Essence of PKU – A short story collection 2019

Posted on by Amanda Horner
Years ago , I wrote about my dream to put together a collection of short stories from the PKU Community.
 
I received replies from a few interested people. Id love to really get this going again if their is still interest. What I am looking for is a short story submission approx 3000 words or less.
 
My outline and “chapters ” are broken down into 10 categories and I need submissions for each. I will limit to the first 5 who respond to each. IF there are more id look at doing a series or a second book.
 
The 10 groups I am looking for are :
 
Section 1 : New Diagnosis
 
Examples are :
A mothers perspective,
A fathers perspective
The new pku parents
What life looks like with a PKU infant. The emotions, the education and training received. The challenges and the struggles. What has helped and how you coped /managed. As well as positive stories.
 
 
Section 2 : The Early years ( from a parents perspective)
 
Examples being : “firsts” first foods, first clinics, first tests, first teeth ext ect
 
a growing baby
toddler adventures- raising a toddler with PKU
starting kindergarten
the elementary years
 
 
Section 3 : The Teen years ( written by teenagers with PKU )
 
Taking the reins – taking over the diet from your parents.
How you manage the diet on day to day as well as socializing and eating out, parties, sporting events, field trips, camping, traveling etc.
cheating on your special diet and treatments.
managing the diet through things like :
middle school/ high school / Sports and team sports
work / going out with friends / relationships and dating.
 
 
Section 4 : The college years – (Written from pku patients who actually have PKU )
 
Post secondary education and dealing with diet, dorm life, campus living, cooking and preparing meals , meal planning around classes and projects or social outings ect ect. Did you share your PKU with your class mates . why or why not?
 
 
Section 5 : Adult life – ( ADULTS WITH PKU THEMSELVES!)
 
Managing life and the diet in day to date while juggling careers, working, cheating on your diet, dating, relationships, marriage, building your families, deciding to have children not not. Adopting? surrogacy? traveling, inspirational stories for other adults with PKU to let them know they are not alone. Perhaps something you struggled with as a Youth and how you over came in. Did you use ot have high levels? how did you cope and how did you mange now?
Loosing weight ? Active athletic life style? All the nitty gritty!
 
Also want to hear from Adults returning to diet .
 
 
Section 6 : Maternal PKU ( WOMEN WITH PKU WHO ARE Pregnant or have been pregnant.
 
Stories from PKU moms and their pregnancies , take us through the maternal PKU journey .
I will write for this section so need 4 others.
 
 
Section 7 : PKU Pioneer Adults
Diet for life was not the normal until the late 80s so many kids where taken off diet at a young age. We want to hear from older adults off diet ( over 40 years old ) , returning to diet and the struggles they face. How the diet has changed, have the changes and new research benefited from them? What struggled and challenges do they face? What did they go through an how is the diet now? What kinda of lives are they leading? What would help them ?
 
 
Section 8 : PKU Around the world
 
Stories about how treatment differs around the world, and clinics, tracking , foods , policies ect ect.
submissions would be taken form 5 different areas. Canada, USA , UK etc where the author would describe what treatment is like and how the diet is managed where they live. This chapter would bring attention to the differences and need for universal care standards.
 
 
Section 9 : New advancements in treatments. Are you a kuvan responder or are you on PALYNZIQ ? are you trialing another treatment? We want to hear all about your journey!
 
 
Section 10 : Stories from medical professionals who treat or work with PKU. What inspired you to work with PKU, about some memorable experiences you have had working with PKU , the changes you have seen since beginning work in this career, how care has involved over the years. what your hope are for the future and your thoughts and feelings on the current level of care and aces to treatments.
This section would be great for Dietitians, food companies, How much phe employees, cook for love employees, low protein food and formula distribution companies and creators. As well as researchers, doctors and nurses!
 
We want to include you all!
 
if this is something you may be interested in please contact myself through this page.
 
Thank you.
Amanda C
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PKU Book Project

PKU Book Project 2015

Posted on by Amanda Horner

I have been slowly trying to work on a PKU Book project for the past 2 years.  It has taken a long halt over the last year as life has many twists and turns.  The interest wavered and I did not achieve my goal for submissions and had to put the project on the back burner for a while.

However the time has come to dust off the cobwebs and begin work again. I have partnered with Kay Emerson to help make my dream come true.

This project is so important to me , a goal I have set to achieve and  I dream of seeing it become a reality. It cannot do so with out the support of the community and I need your help!

For those of you who do not know about the Book project , or are new to my site. I am working on a collection of PKU personal stories. I have designed a book similar to the ” Chicken noodle soup for the soul” book series but about PKU. I am collecting PKU personal stories ; There are 11 chapters that I am looking for submissions in. Each submission should be no more than 4000 words and must meet the criteria of one of the following chapters. Once I have a suitable amount of submissions kay and I will begin editing and compiling the stories into a collection and will have the book published in hard copy and hopefully e-book files.

The categories are now as follows:
Chapter 1 : ( FULL) we have plenty of stories to fill this chapter.
New Diagnosis. Infants to age 5.
Chapter 2 :
The Early years : Elementary school age
.
Chapter 3:
Teen years. Age 13-18. Transitioning clinics, managing your own diet. Highschool with PKU
* Note this category at this time is empty. We have NO writers!
Chapter 4: College years : post secondary school experiences. ( university too)
Chapter 5:
Adult life , living & working with PKU. Relationships and every day life, struggles and accomplishments.
Chapter 6: Pioneers of PKU : older adults living with PKU, been taken off diet as a child. Age 35 and older
 Chapter 7: MPKU personal stories
Chapter 8:
Travelling with PKU
Chapter 9: Family members perspective ( spouse)
Chapter 10 :  Kuvan/ peg pal / LNAAS treatment
Chapter 11: Medical professionals who treat PKU
 Examples:
* how they first became interested in PKU
* why they treat pku
* treatments and changes over the years
* personal stories
* personal experiences
* the evolution of PKU throughout their careers
* thoughts and feelings
Chapter 12: Non Profit PKU charities
Note:  This category has no submissions or anyone signed up. We have NO writers.
Chapter 13: Low protein PKU food and formula company workers.
 Chapter 14 :Kay Marie Emerson and Families personal stories.
Chapter 15 : Amanda Cosburn Short Bibliography.
To submit a story, or to if you have any questions regarding this project please contact me at amandacosburn@gmail.com
Again Thank you everyone for your interest and to those who have already signed up or submitted!
Please pass this in and share share share , we need more interest to make this happen!!!
Thank you!
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PKU Book Project

Updated Post Regarding PKU Book Project. Please Read.

Posted on by Amanda Horner

I am posting about my PKU Book project again for all those new fans and followers or simply for those of you who need reminders and more information.

As many of you already know , I am working on a project of putting together a book about PKU and PKU life. The idea behind the book is a collection of personal stories. There is no longer any deadline. I am keeping submissions open until I have collected enough to fill the book for publishing.  I am in need of many many more submissions. I am making it my goal to collect 100 different personal PKU stories.

If you have ever read the book series “Chicken Noodle Soup For The Soul” this book would be very similar. I want it to be able to speak to anyone who picks it up. That whoever reads it, can relate to it. That the words on the pages reach somebody personally. No matter where you are in your PKU journey, that you can take away from this book.

I have broken the book down in to different chapters and am looking for submissions to fill each category. Submissions should be roughly 4000 words. Can be less, can be more. I have a title for the book but am reluctant to share as a lot of ideas of mine have been taken from the idea before I have been able to make them into reality.

What I am looking for in each submission , is personal stories, Details, emotions, thoughts and feelings. Tell me your story as If I don’t know what its like. Don’t worry about explaining PKU or MPKU I will be doing that at the end of the book. Talk about your challenges, how you over came them, your successes, your thoughts and feelings, your triumphs, what you learnt from your PKU life, or your child’s life, who supports you, what your clinic is like, what influence’s you, your PKU and your diet. What your goals, hopes and dreams are. Every Chapter is different so please message me if you need help . I am here to support you along the way.

If you are interested in working on this project with me, please review the categories below and message me to let me know what one you would like to write for.

The categories are as follows:

Introduction:

What is PKU? -Written by Amanda Cosburn

Chapter 1 :

New Born Diagnosis &  Infants to age 5.

Chapter 2 :
The Early years : Elementary school age

Chapter 3:
Teen years. Age 13-18. Transitioning clinics, managing your own diet. High school with PKU

Chapter 4:
College & university years : post secondary school experiences

Chapter 5:
Adult life , living & working with PKU. Relationships and every day life, struggles and accomplishments

Chapter 6:
Pioneers of PKU : older adults living with PKU, been taken off diet as a child. Age 35 and older

Chapter 7:
MPKU personal stories

Chapter 8:
Travelling with PKU

Chapter 9:
Family members perspective ( spouse)

Chapter 10 :
Kuvan/ peg pal / LNAAS treatment

Chapter 11:
Medical professionals who treat PKU
* how they first became interested in PKU
* why they treat pku
* treatments and changes over the years
* personal stories
* personal experiences
* the evolution of PKU though out their careers
* thoughts and feelings

Chapter 12:
Non Profit PKU charities

Chapter 13:
Low protein PKU food and formula company workers.

Chapter 14 :
Amanda Cosburn – A Short Bibliography

Thank you for your interest and I hope to hear from many more people willing to participate. This project means a lot to me and I really hope it will be a success!

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PKU Book Project

Still looking for your “Personal Story” submissions.

Posted on by Amanda Horner
  1. Attention PKU friends and family, I am still looking for submissions of personal stories for the book I am writing. If you are interested and fit of the categories below please message me or email me . Submissions are due ASAP and no later than the last week of December. Word count is on or under 4000 words. If you need help with suggestions and editing please email me. I would be happy to read it… over and give you suggestions.

    The categories are now as follows:
    Chapter 1 : FULL
    Diagnosis. Infants to age 5. 

    Chapter 2 :
    The Early years : Elementary school age
    * Note: We need at least 5 more submissions for this category.

    Chapter 3:
    Teen years. Age 13-18. Transitioning clinics, managing your own diet. High school with PKU
    * Note this category at this time is empty. We have NO writers!

    Chapter 4: College years : post secondary school experiences. ( university too)
    * Note: We need many more submissions for this category.

    Chapter 5:
    Adult life , living & working with PKU. Relationships and every day life, struggles and accomplishments.
    *note we need at least 4 more submissions

    Chapter 6: Pioneers of PKU : older adults living with PKU, been taken off diet as a child. Age 35 and older
    *note: We need 8 more adults willing to share their stories for this category.

    Chapter 7: MPKU personal stories
    *note : we need 4 more submissions for this category.

    Chapter 8:
    Travelling with PKU
    * Note : we need 9 more here!

    Chapter 9: Family members perspective ( spouse)
    Note: we need 8 more for this category .

    Chapter 10 : Kuvan/ peg pal / LNAAS treatment
    *Note : We need 7 more participants here.

    Chapter 11: Medical professionals who treat PKU
    *Note : we need 9 more dieticians or doctors and nurses for this chapter.
    * how they first became interested in PKU
    * why they treat pku
    * treatments and changes over the years
    * personal stories
    * personal experiences
    * the evolution of PKU though out their careers
    * thoughts and feelings

    Chapter 12: Non Profit PKU charities
    Note: This category has no submissions or anyone signed up. We have NO writers.

    Chapter 13: Low protein PKU food and formula company workers.
    *Note: we need 9 more here too!

    Chapter 14 : Amanda Cosburn Short Bibliography.

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PKU Book Project

PKU Book Update ( please read)

Posted on by Amanda Horner

I have now finalized the lay out, table of contents and a title for our book. However I will not be releasing the name at this time.  it will be a surprise!

 

As many of you know I have extended the deadline to submit your stories to October 20th 2013 .   Also the word count is now 4000. I have upped the word count to help make the stories more deep and personal . Id really like you to go in depth and describe your story focusing on the category you have chosen.  I want to hear how you felt and what you think. Don’t just tell your story.  Explain it.  I have also made some changes to the categories again so please read and share with all your PKU friends and family.

 

The categories are now as follows:
Chapter 1 :
New Diagnosis. Infants to age 5.
Chapter 2 :
The Early years : Elementary school age
* Note:  We need at least 5 more submissions for this category.
Chapter 3:
Teen years. Age 13-18. Transitioning clinics, managing your own diet. Highschool with PKU
* Note this category at this time is empty. We have NO writers!
Chapter 4: College years : post secondary school experiences. ( university too)
* Note: We need many more submissions for this category.
Chapter 5:
Adult life , living & working with PKU. Relationships and every day life, struggles and accomplishments.
*note we need at least 4 more submissions
Chapter 6: Pioneers of PKU : older adults living with PKU, been taken off diet as a child. Age 35 and older
*note:  We need 8 more adults willing to share their stories for this category.
 Chapter 7: MPKU personal stories
*note : we need 4 more submissions for this category.
Chapter 8:
Travelling with PKU
* Note : we need 9 more here!
Chapter 9: Family members perspective ( spouse)
Note: we need 8 more for this category .
Chapter 10 :  Kuvan/ peg pal / LNAAS treatment
*Note : We need 7 more participants here.
Chapter 11: Medical professionals who treat PKU
 *Note : we need 9 more dieticans or doctors and nurses for this chapter.
* how they first became intersted in PKU
* why they treat pku
* treatments and changes over the years
* personal stories
* personal experiences
* the evolution of PKU though out their careers
* thoughts and feelings
Chapter 12: Non Profit PKU charities
Note:  This category has no submissions or anyone signed up. We have NO writers.
Chapter 13: Low protein PKU food and formula company workers.
*Note: we need 9 more here too!
Chapter 14 : Amanda Cosburn Short Bibliography.
Again Thank you everyone for your interest and to those who have already signed up or submitted!
for those of you who have submitted, I have finally reviewed your stories, made some notes and will be getting back to you all next week!
Please pass this in and share share share , we need more interest to make this happen!!!
Thank you!
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PKU Book Project

PKU Book update

Posted on by Amanda Horner

Greetings everyone,

as many of you may know already about my latest project. A collection of personal stories about life with PKU. that I will be publishing into a book. I have been working with a number of people already and have already had many stories come in.

However, I still need way more! Also I am extending the deadline untill October 20th 2013. With hope of preparing the manual script and sending it to a publisher by winter and hoping for publication in the new year.

As I have stated in various posts before, there are 11 categories I am looking for .

Here are the 11 sections I have broken down to. I am looking for a minimum of 6  stories for each section, however I have no set limit for the time being.  :

Section 1 : New Diagnosis  

Examples are : a mothers perspective,
a fathers perspective
the new pku parents.
Section 2 : The Early years ( from a parents perspective) 

Examples being : “firsts” first foods, first clinics, first tests, first teeth ext ect
a growing baby
toddler adventures- raising a toddler with PKU
starting kindergarten 
the elementary years

Section 3 : The Teen years ( written by teenagers with  PKU )
Taking the reins – taking over the diet from your parents.
the diet
cheating
middle school/ high school
friends / relationships

 

Section 4 : The college years – (Written from pku patients)

post secondary education and dealing with diet, door life, classes, social outings ect ect.

 

Section 5 : Adult life – ( ADULTS WITH PKU THEMSELVES!)
 
careers, working, cheating, dating, relationships, marriage, families, traveling, inspirational stories.

 

Section 6 : Maternal PKU ( WOMEN WITH PKU WHO ARE PG OR HAVE BEEN PG )
Stories from PKU moms and their pregnancies

 

Section 7 : PKU Pioneer Adults

Older adults off diet, returning to diet and the struggles they face.

 

Section 8 : PKU Around the world

 

Stories about how treatment differs around the world, and clinics, tracking , foods , policies ect ect.

 

Section 9 : PKU FROM A FAMILY MEMBER’S PERSPECTIVE, SPOUSE, SIBLING OR CLOSE FRIEND) 

Section 10 : Stories from medical professionals who treat or work with PKU.

Section 11 : Treatments with KUVAN , Peg Pal or Large Neutral Amino Acids.

 

Many of these categories are still needing submissions and most categories have 1 or 2 submissions. I am in need or way more submissions for Sections 3 through to 11.  I have no limit to how many stories I will except but I would like to see a minimum of 50 over all.  The most popular sections are 1 and 2 and though id prefear to close those sections now and focus on the others, if you would really like to be apart of this project and submit a story please email me and we will work it out.

The idea behind this book, I have been reluctant to share do to wanting to protect my idea and not have more ideas stolen from me , is similar to something you would read in the “chicken noodle soup for the soul” series of books. If you are not familiar with these books, they are a collection of short personal stories with the purpose of something for everyone. Inspirational and educational.

My idea for this project was that anyone with PKU  , or even friends and family of PKU and maybe even the public will learn from it, find a story to relate to, for PKuers not to feel alone in their journeys and to create more awareness for PKU.

I am choosing to share this information with you all now publicly in hopes of generating more interest and hopefully that more people will come forward and share their stories.

I have high hopes for this project. I feel really great about it and I send a heart felt thank you to all those already participating and to those who have submitted their stories already.

I am hoping to read them all in the next couple days as I battle this stomach flu and get back to you all with feedback.

Please feel free to share this post with anyone that you think may be interested or have them email me for further information.

Also please if you have any questions, comments or would like to partake email me at my personal email adress!

Amandacosburn@gmail.com

 

thank you!

Your pku friend Amanda

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PKU Book Project

Project Update,

Posted on by Amanda Horner

For those of you who have been in contact with me and are taking part in my latest pku project:

I have made some changes to the project. I am increasing the word count to 3000.  This means your word count can under or up to 3000 words. Also I am including another group.

PKU patients using alternate therapies such as KUVAN, LNAA’s or Peg Pal.

Deadline has been moved to the first week of August.

Be sure to check back to my blog periodically for other updates.

 

 

For those of you who would like to be reminded about the project here are the details again :

I am looking for individuals who would like to share their personal stories and I am looking for NOW 11 groups of stories with approx 6-10 in each group.

The 10 groups I am looking for are :

Section 1 : New Diagnosis ( THIS SECTION IS NOW FULL)
Examples are : a mothers perspective,
a fathers perspective
the new pku parents.

Section 2 : The Early years ( from a parents perspective)
Examples being : “firsts” first foods, first clinics, first tests, first teeth ext ect
a growing baby
toddler adventures- raising a toddler with PKU
starting kindergarten
the elementary years

Section 3 : The Teen years ( written by teenagers with PKU )
Taking the reins – taking over the diet from your parents.
the diet
cheating
middle school/ high school
friends / relationships

Section 4 : The college years – (Written from pku patients)
post secondary education and dealing with diet, door life, classes, social outings ect ect.

Section 5 : Adult life – ( ADULTS WITH PKU THEMSELVES!)

careers, working, cheating, dating, relationships, marriage, families, traveling, inspirational stories.

on diet and off diet.

Section 6 : Maternal PKU ( WOMEN WITH PKU WHO ARE PG OR HAVE BEEN PG )
Stories from PKU moms and their pregnancies

Section 7 : PKU Pioneer Adults
Older adults off diet, returning to diet and the struggles they face.

Section 8 : PKU Around the world
Stories about how treatment differs around the world, and clinics, tracking , foods , policies ect ect.

Section 9 : PKU FROM A FAMILY MEMBER’S PERSPECTIVE, SPOUSE, SIBLING, GRANDPARENT,  OR CLOSE FRIEND)

Section 10 : Stories from medical professionals who treat or work with PKU.  ( DIETITIANS, NURSES, DOCTORS, PERSONAL TRAINERS, COUNSELORS, ADVOCATES, ECT ECT ) What inspired you to work with PKU, about some memorable experiences you have had working with PKU , the changes you have seen since beginning work in this career, how care has involved over the years. what your hope are for the future and your thoughts and feelings on the current level of care and access to treatments.

Section 11 :  PKU and KUVAN , or LNAAs and Peg pal.

If this is something you think you would be interested in working on me with please send me a email for more details . Stories must include , name, where you are from , a title, your age , or age of person with PKU. Stories are being expanded to be under 3000 word count. I am available for proof reading  and assistance with editing.  The deadline for submissions are the first week of August.

my email again is amandacosburn@gmail.com

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PKU Book Project

New Project

Posted on by Amanda Horner

I am working on a new PKU project and I am looking for  individuals interested in sharing their personal PKU stories . I have made a request on my facebook page and contacted some community friends whom I think would be interested. However I am still looking for many more participants from the following categories :

1: Non PKU parents of Elementary school children who have pku,

2 : Teenagers with PKU

3: Post Secondary students with PKU ( college, university) 

4: Adults on diet with PKU

5: Adult off diet with PKU ( or recently/ returning to diet) 

6: Older Adults with PKU who where taken off diet. ( over the age of 40 ) 

7: PKU mothers who have had a MPKU pregnancy.

8: Men with PKU

9: Siblings , close friends or spouses of someone with PKU

10 : Medical professionals who treat PKU , like nurses and dietitians.

If you fit any of these categories and are interested in sharing your story or would like more details please  email me at amandacosburn@gmail.com There is a lot more spaces available.  I am looking for at least 5 or 6 for each group. 

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