Wow – thanks for your feedback! I got more responses than I expected. And, your responses were very helpful. Based on your feedback, here is the order in which I’ll be completing my upcoming writing projects:
The God Solution
This order works for me and it helps clarify my priorities. Thanks for your help!
So stay tuned – I’ll have some updates coming shortly pertaining to Cystic Diagnosis. You can expect some progress updates, free samples, a couple more surveys and perhaps a contest or two.
We found out that our daughter Katie had Cystic Fibrosis on September 30 2008. Katie was 17 months old at the time.
Cystic Fibrosis, or CF, affects the lungs and the digestive system. CF is the most common, fatal, genetic disease affecting Canadian children and young adults. Forty years ago, most children with CF did not live long enough to attend kindergarten.
We were devastated. We were afraid. We were concerned for our child. We worried if our other child might have CF. We wondered what the future would bring. We wondered if we would have any more children. We had a million questions.
Over time, we got on our feet again. We spent time at the CF clinic. We met with other CF parents. We researched the disease. We spent lots of time on the internet. We read books. We watched movies. And eventually, we got to the point where we felt like we understood what we were dealing with.
This book is a compilation of the things that we learned in the early days. We share our personal story. We share resources that we’ve found helpful. We’ll explain how we’ve learned to navigate the health care system and how to optimize the help that is available to CF patients and their families.
Ideally, we’d like to provide a handbook that will comfort other families that have just learned that a loved one has cystic fibrosis. And, we’d like to provide context for those that are on the periphery of cystic fibrosis – friends and extended family members of those affected by CF.
Here’s the basic outline of the book:
1. Our Story – Intro
2. Practical Matters – Our first clinic visit
3. Lifestyle changes:
– Family priorities
– NO SMOKING!
4. Existential angst (optonal philosophy chapter)
5. A depressing reading list
– Medical research
– Community / Support groups
– The Internet Community
7. Charity work
8. Carrying on & Living life
9. One year on – where we’re at
– Having more children after a CF diagnosis
– Universal health care
– Additional resources
What do you think? Is there a need for such a book? Would you find it helpful? Am I missing anything in the basic outline above? Let me know… The more feedback I get, the better the end product.
This book is currently in development. Check back regularly for updates, sneak peaks and announcements pertaining to this book’s publication timelines.
Thank you so much for your generous contributions to Team Katie in support of the 2012 Great Strides fundraiser. We continue to be overwhelmed by the tremendous outpouring of generosity and encouragement that we’ve received from you, our friends, as we do what we can to help find a cure for Cystic Fibrosis.
This annual fundraiser has been a huge motivator for us. In many ways, we feel powerless to help Katie. Our fundraising efforts have been one of the key ways that we’ve had to focus our energy in a positive way to help Katie live a long, healthy life. The funds that we raise are efficiently used to support CF patients and to help find a cure.
Some numbers from today:
Total money raised for Cystic Fibrosis Canada = $2,082,058+
Total money raised for the Niagara Great Strides Walk at Safari Niagara = $40,000+
Total money raised for Team Katie = $19,000+
Total sponsors for Team Katie = 251
Total Team Katie walkers today = 65
Your monetary contributions have been a huge source of inspiration for us and we thank you for that. Not only are you helping fund the fight to beat CF, but each of you have also given our family a boost – we live with CF on a daily basis. We try not to get down, and most of the time, we’re okay. But, sometimes it all catches up with us. The weight of a fatal disease in the family makes for some grim thoughts from time to time. But, we feel comfort knowing that we have so many friends that support us and rally behind us in this cause.
To everyone that has helped us this year, we thank you. Each of you, in contributing your time, money, thoughts and prayers are helping to save Katie’s life. And for that, we are eternally grateful.
On walk day, make sure you bring:
* your “manage online donations” and “manage cash and cheque donations” printouts;
* your Great Strides t-shirt (if you have one from previous years);
* dress for the weather – the walk will proceed rain or shine;
Note: we were asked for our t-shirt sizes late this year. We don’t know if we’l be getting t-shirts this year. We’ll find out on Sunday morning if we have new t-shirts for this year. If you have a t-shirt from last year, please wear it.
Here’s the ballpark agenda for the day:
9am: Assemble as a team;
– get a team picture – here’s last year’s picture;
– submit your paperwork at the registration desk (each walker/family needs to register at the registration desk);
9:30am: Go our separate ways and enjoy the walk through the park;
11:30am: Meet as a team in the bandshell area (it’ll be marked) to eat lunch
– Last year, complimentary hot dogs & pop were provided;
– Bring your own drinks & snacks;
– For the kids: enjoy the bouncy castles, clown, balloon animals and face painting;
1pm: Awards ceremony – top fundraisers get prizes!
– stick around for this – in previous years, many Team Katie fundraisers received really nice prizes;
To do in advance:
If possible, keep track of your cash and cheque donations online so that this will go towards our Team Katie grand total (Click here to log in, then click on “Fundraising” at the top of the page. Under your fundraising summary (middle of the page) click on the “Manage Cash & Cheques” and follow the instructions);
Print out your “manage online donations” and “manage cash and cheque donations” and bring them with you on walk day along with any cash & cheques that you have collected;
Mark your submissions clearly with “Team Katie” to make sure they are reflected in our team’s total!
If you have questions or concerns, don’t hesitate to email or call us:
Home: (905) 563-7195
Julie cell: (905) 348-9169
Todd cell: (289) 925-5246
Thanks for your commitment to help us make CF mean Cure Found!