Hi, I wrote the first ever cf childrens book. all profit from the book goes to to help find a cure. I will be writing 7 books, until a cure is found.
kyle’s first crush.
story about a little boy who falls in love with a little girl in pre -k. he learns she has cf. loves her no matter what.
a Timeless story about how loves conquers all.

2nd book coming in October: Kyle’s First Play Date. Kyle goes to Ashley’s house and doesn’t realize that she has 2 older sisters, who pull crazy cranks on him. very funny.

Could use help promoting the book!

Leah Orr
book can be found at,,

Featured on ABC’s Health Watch, Opray Winfrey’s the Big Give in the fall,
MIami Herald, So. Fla, Sun Sentinel, Parenting Magazine,

My husband and I have raised $250,000 over the past 4 years with our walks, and through book sales. Just think of how much we could raise if this book really takes off.


The book is adorable. What a wonderful way to raise funds for cf research. Hope everyone buys it…RoseTat2

I love this book!
My 4 year old reads it every day!
she likes the stinky poop part the best!
I recently bought more for friends. They also love the book!
Great Job Leah.
This book is so fun for cf kids.

What a great idea. I should tell the people in Australia about that. At the moment I am very active raising awareness:
I have a dinner/auction coming where 50-100 people will come to listen to me.

At the auction I have several signed books, including a signed children’s book about a Tasmanian Devil. Maybe I should include a signed copy of yours too, and give it a good plug. If you sent me one or two I can fix you up with PayPal or mail you a cheque to cover it. The dinner/auction is Sunday July 8. You can’t sign them if I order via Amazon!


The Great COFE for CF
2 Rose Court
Devonport, Tasmania 7310

I would be happy to send you a few signed copies - Just spread the word
about the book. I will send a few cards along with it to hand out to cf
families who have young children. Pre k - 3rd grade.
This is the first in a series of 7.The next book will be available in
October. I will mail out the books tomorrow.
Hope you have a very successful event on the 8th. We hosted a great strides
walk this year and raised over $85,000.
Next year we hope to raise over $100,000.
If this book series really takes off, we could raise into the millions. This
is what I hope for. $7 of each book goes directly to research at I
mail my quarterly payments to our local chapter in south florida.
I hope we will have a cure within the next 5 - 7 years, and that all goes
well with Gene Therapy.
My daughter is 4, and the clock keep ticking…
I will work as hard as I have to, to do may part!!!
Good Luck!
Keep in Touch.
One day, maybe I’ll have to make my way down under…
Leah Orr

The book was just recently featured on ABC’s Healthwatch, and in the Fall
Oprah Winfrey’s - The Big Give.

-----Original Message-----
From: waltervp []
Sent: Tuesday, June 19, 2007 9:01 PM
Subject: Re: [cf] books

I think it is great that you are writing books in hopes of providing money to go toward research, but you realize that not much of the money goes toward actual research when it goes to the foundation. Also, I doubt very seriously there will be a cure in 5-7 years. I don’t mean to appear negative, but the chances of them “curing” CF through gene therapy is going to take a lot more work than 5-7 years. There are way too many mutations and they would have to figure them all out and fix each and every one in order for that to work. I am not saying there won’t be better treatment in that time though. I am 30 years old and been hearing the “cure is right around the corner” the whole time and I will believe it when I see it. Also, for those who are interested, there is a CF support group call and is a wonderful form of support. I have been a member for about 14 years. take a look at the web site and if you wish, join us there.

there are also lists of other books that have been written on there as well.

Wendy 30 w/CF, CFRD, CF Arthritis, Asthma and Hypothyroidism

Yes, cfpatient is right, might not have a cure in 5-7 years. I have heard it all before too, being 41… Excuse me while I go sit out my sentence, don’t mind me… I’ll just sit here quietly and sob.

No seriously, we need to have hope! At some point there will be a point where it really is 5-7 years, but you’ll never know when that point is till 5-7 years later! We need to live with hope! In the mean time treatments are just getting so good that life really is worth living. Imagine having migraines or chronic back pain, even insomnia… People live with these really awful conditions for a full life time. At least we are born with CF and are used to it, not like it just happened yesterday. Imagine being 100% normal and then being paralysed in an accident. You can’t live with that fear either!

I am hoping to make the first all positive documentary on CF, but who knows there is one out there already, who knows it doesn’t happen or something happens on the way and it is not going to be all that optimistic if I end up in hospital God forbid. We sure do not have the funds for producing anything at the moment. We are leaving next month and we borrowed money to buy good filming equipment. Sure the odds are against us, but hey, I am going and we will get a documentary happening!

The support team coming with me was all prepared to go self-funded even though it was going to be a struggle for us all. Amazingly we got enough community support to get their airfares paid! We totally unexpectedly got a friend in Europe lend me a brand new car, and a company I worked for in the past decided to put a banner on it in return for some sponsorship. Patagonia just came on board unofficially with a shipment of clothing for us… We are counting down to our departure and only just this morning the cinematographer confirmed he can make it! It all slowly falls in place with enough optimism, and if it doesn’t I don’t mind either.

I am getting lots of awareness just getting this far! Think of all the people affected by CF who hear about a 42 year old (after July 8) even just PLANNING to ride 4000 kms through 10 countries with 1000+ pills! Imagine if I did pull of a documentary that sold worldwide and funded MY choice of CF Research Fund by $100K+. Stuff that dreams are made of.


PS And almost every step of the way people tell me this is bad, that is bad, should’ve done this or that, should’ve called them, should’ve, they would’ve, you could’ve… But at least I, and Leahoor, are doing it!


I really am not a negative person and I live my life to the fullest every day as best as I can. I still have PFT’s in the 70’s but I am in the hospital every 3 months on IVs for about 3-6 weeks at a time. I have the CF diabetes and I am on an insuliln pump, just found out a couple of weeks ago that because of Tobra and Vanc by IV for so many years, I have to get hearing aids in both ears. I worked full time for 5 years and retired because I would make more money on diability from where I worked than what I was bringing home after all the time I missed. I was diagnosed with CF at 4 months of age and I have always been sick frequently. I am not saying there will never be a cure, but I personally don’t think it will happen in my life time. I am not without hope, I am just realistic. There just isn’t enough money out there going to CF research. I am not upset about being sick, I am perfectly happy in my life and have no problem being sick, it is “normal” to me. I am happily married and I am in school full time trying to finish my Bachelors degree either in nursing or radiology. I was told not to have children so my tubes were tied a long time ago, so hubby and I have 4 dogs (all inside) and 2 cats outside. They are our babies for now and we may adopt one day. My husband is in construction and helps out quite a bit with me being sick. When I do home IV’s he helps with those and he hooks me up to my insulin pump if I need to be stuck somewhere I can’t reach. When I am in the hospital, he works about 50 hours a week, takes care of the house, the animals and still comes to see me every day. Though he is stressed out when I am in the hospital. he also comes to get my laundry and brings it home, washes it and brings it back and will even cook me a real meal and bring it to me down there. So, life is good, and I am happily content and live life one day at a time.

Wendy 30 w/cf and a host of other problems :slight_smile: Mobile, AL

Thanks for all kind words and suport from everyone!

LOVE the book!! Sweet, adorable, and beautiful illustrations! Great idea for spreading the awareness of CF!