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