Team Katie – Great Strides 2013

Katie Dow - Team Katie 2012Folks,

As many of you know, our daughter Katie has Cystic Fibrosis. Katie was diagnosed with CF on September 30 2008. She was 17 months old at the time.

On Sunday May 26 2013, Cystic Fibrosis Canada will be hosting the annual Great Strides walk for cystic fibrosis. We will be walking and invite you to join us for this annual event.

CF, which affects the lungs and the digestive system, 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. Today, half of Canadians with CF are expected to live into their 40s and beyond.

While life span has improved for patients with CF, quality of life is still an issue. Daily treatments, medication, clinic visits and health challenges are always present. When Katie is healthy, we do two treatment sessions a day with her. When she is sick (cold, flu, etc.), we do three or four treatment sessions each day with her.

Here’s a brief list of her regular medicine intake and treatment regimen:

  • approx 30 pills a day (enzymes – they help Katie digest food);
  • vitamin supplements;
  • 2 to 4 Pediasure nutrition supplement drinks each day;
  • Nebulizer + medicine – basically, a mist mask that Katie wears twice a day for 20 minutes each time;
  • Percussion treatment – 20 minutes of hitting her chest and back – twice a day;
  • Inhaled antibiotics – she’s been on this medicine pretty much non-stop for the last 6 months;

Plus, the following “specialty items” when she is sick with a cold, flu or other sickness:

  • Oral antibiotics;
  • Additional medicine in her nebulizer from time to time as her health dictates;
  • Additional nebulizer and percussion treatment – typically 3 or 4 treatment sessions a day when she’s sick;

Please watch our Great Strides 2013 video, which provides a window into our world:

Each year, on the last Sunday in May, friends, family and co-workers of people with cystic fibrosis participate in “Great Strides”, which is Cystic Fibrosis Canada’s largest national fundraising event. Walk with us on Sunday May 26 2012.

To assist, you can:

  1. Donate money;
  2. Donate and/or collect pledges and Walk with us on Sunday May 27; and/or
  3. Recruit others to join us in this fundraising event;

To join our team, “Team Katie”, and walk with us on May 26 at Safari Niagara in Stevensville, click here: Join Team Katie

To sponsor us directly in our fundraising efforts for Team Katie, click here: Sponsor Team Katie

We thank you for your support. Our wish is that one day, CF will stand for “Cure Found”.

Thanks!

Todd, Julie, Noah, Katie & Riley Dow

Team Katie – Great Strides 2012 results!

Team Katie - Great Strides 2012 photo gallery

Team Katie – Great Strides 2012 photo gallery

To all Team Katie supporters,

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

You can see a slideshow of some pics from this weekend’s event here:
http://www.flickr.com/photos/toddhdow/sets/72157629922562944/show/

And, the complete flickr photo stream of the event is located here:
http://www.flickr.com/photos/toddhdow/sets/72157629922562944/

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.

Much love,

Todd, Julie, Noah, Katie & Riley

Team Katie – Great Strides 2012

Katie Dow - Team Katie 2012Folks,

As many of you know, our daughter Katie has Cystic Fibrosis. Katie was diagnosed with CF on September 30 2008. She was 17 months old at the time.

On Sunday May 27 2012, Cystic Fibrosis Canada will be hosting the annual Great Strides walk for cystic fibrosis. We will be walking and invite you to join us for this annual event.

CF, which affects the lungs and the digestive system, 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. Today, half of Canadians with CF are expected to live into their 40s and beyond.

While life span has improved for patients with CF, quality of life is still an issue. Daily treatments, medication, clinic visits and health challenges are always present. When Katie is healthy, we do two treatment sessions a day with her. When she is sick (cold, flu, etc.), we do three or four treatment sessions each day with her.

Here’s a brief list of her regular medicine intake and treatment regimen:
- approx 30 pills a day (enzymes – they help Katie digest food);
- vitamin supplements;
- 2 to 4 Pediasure nutrition supplement drinks each day;
- Nebulizer + medicine – basically, a mist mask that Katie wears twice a day for 20 minutes each time;
- Percussion treatment – 20 minutes of hitting her chest and back – twice a day;
- Inhaled antibiotics – she’s been on this medicine pretty much non-stop for the last 6 months;

Plus, the following “specialty items” when she is sick with a cold, flu or other sickness:
- Oral antibiotics;
- Additional medicine in her nebulizer from time to time as her health dictates;
- Additional nebulizer and percussion treatment – typically 3 or 4 treatment sessions a day when she’s sick;

Please watch our Great Strides 2012 video, which provides a window into our world:

Each year, on the last Sunday in May, friends, family and co-workers of people with cystic fibrosis participate in “Great Strides”, which is Cystic Fibrosis Canada’s largest national fundraising event. Walk with us on Sunday May 27 2012.

To assist, you can:
1. Donate money;
2. Donate and/or collect pledges and Walk with us on Sunday May 27; and/or
3. Recruit others to join us in this fundraising event;

To join our team, “Team Katie”, and walk with us on May 27 at Safari Niagara in Stevensville, click here: Join Team Katie

To sponsor us directly in our fundraising efforts for Team Katie, click here: Sponsor Team Katie

We thank you for your support. Our wish is that one day, CF will stand for “Cure Found”.

Thanks!

Todd, Julie, Noah, Katie & Riley Dow

Team Katie – Great Strides 2011 results!

Team Katie - Great Strides 2011

Team Katie - Great Strides 2011

To all Team Katie supporters,

Thank you so much for your generous contributions to Team Katie in support of the 2011 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 the Canadian Cystic Fibrosis Foundation = $1,961,608+
Total money raised for the Niagara-Hamilton Great Strides Walk = $107,686
Total money raised for Team Katie = $17,154
Total sponsors for Team Katie = 243
Total Team Katie walkers today = 80

You can see a slideshow of some pics from this weekend’s event here:
http://www.flickr.com/photos/toddhdow/sets/72157626383527816/show/

And, the complete flickr photo stream of the event is located here:
http://www.flickr.com/photos/toddhdow/sets/72157626383527816/

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.

Much love,

Todd, Julie, Noah, Katie & Riley

Corporate Sponsors Needed for Team Katie!

Team Katie 2011

Team Katie 2011

Here’s a PDF copy of this letter Please spread the word!

Dear business owner,

As you may know, our daughter Katie Dow is a 4 year old Beamsville resident with Cystic Fibrosis. Team Katie is the group of family, friends and co-workers that are rallying around Katie to help find a cure to for Cystic Fibrosis and we are looking for corporate donations for the 2011 Great Strides Walk.

Please consider sponsoring Team Katie in the 2011 Great Strides walk, which will be held on May 29 2011 at Safari Niagara in Stevensville.

The cause: Help find a cure for Cystic Fibrosis

The need: Cash donations. Donations of goods or services will be:

  1. Auctioned or sold and the proceeds donated as cash; and/or
  2. Awarded as incentive prizes to Team Katie and/or CF Niagara walkers;

Note: 100% of the proceeds from all cash and/or donations will go directly to Cystic Fibrosis Canada via Team Katie as part of our 2011 Great Strides fundraising.

The recipient: Cystic Fibrosis Canada (which is a registered Canadian charity)

The business benefits of sponsoring Team Katie:

  1. Support a local charity need;
  2. Encourage a local family;
  3. Great marketing opportunity;

Marketing opportunities:

Team Katie communicates directly with over 500 individuals, many of whom are located in the Niagara region. This includes family, friends, co-workers and other supporters of Team Katie. This group of people is passionate about this cause and they are acutely aware of (and supportive of) the help that is provided by other Team Katie sponsors, including you!

We use multiple avenues to communicate with Team Katie supporters, including, but not limited to, the following:

Blog (http://breathingasafamily.org):

  • 3000+ page views since September 2010
  • 630 page views in April 2011 alone

Additional Social Media:

  • Team Katie email distribution list = 250+ supporters, almost all of whom are located within Niagara.
  • Facebook (Todd Dow): 450+ friends
  • LinkedIn (Todd Dow): 250+ followers
  • Twitter (toddhdow): 75+ followers

How your company will be recognized:

Walker level – for donations up to $500:

  1. Thank you notes will be sent via Team Katie social media (Twitter, Facebook, LinkedIn) & blog (breathingasafamily.org)
  2. 1 year placement in sponsor area on breathingasafamily.org
  3. Special mention at end of Great Strides campaign thank you email and blog post to Team Katie distribution list

Runner level – for donations from $500 to $2,500:

  1. All of the Walker level benefits; plus
  2. “Runner” level sponsorship placement on breathingasafamily.org in the right side navigation area right below “Support Team Katie” from time of sponsorship until February 28 2012
  3. I’ll create a Facebook fan page for your business and advertise it to my network to help raise your company profile

 Marathoner level – for donations over $2,500:

  1. All of the Runner level benefits; plus
  2. “Marathoner” premium sponsorship placement on the header (top of the page beside the site logo) of breathingasafamily.org
  3. “Marathoner” premium sponsorship placement on all emails that are sent on behalf of Team Katie and Breathing As A Family from time of sponsorship until February 28 2012

 If you are interested in donating $7,500 or more, please contact me directly. I’ll find a creative way to make that size of a donation worth your while (all of the above, plus web marketing consulting, website design, etc.) Trust me, it will be money well spent!

To support Team Katie:

  1. Sponsor Team Katie directly by clicking on the “Click here to donate to Team Katie” link on http://breatuingasafamily.org/ (under “Support Team Katie” at top right of the site);
  2. Email (toddhdow@gmail.com) or call (905.563.7195) Todd or Julie Dow directly to discuss additional donation options;

Thank you for your support,

Todd, Julie, Noah, Katie & Riley Dow

Volunteers needed for Great Strides (Niagara’s largest annual Cystic Fibrosis fundraiser)

Great Strides 2009 registration

Great Strides 2009 registration

The Hamilton and Niagara chapters of Cystic Fibrosis Canada are still looking for additional volunteers to help out with the Great Strides walk, which will be held at Safari Niagara on Sunday May 29 2011.

People are still needed to do the following activities:

  • General greeting
  • Registration desk
  • Wrist band handouts
  • Goodie bag handouts

If you’re interested in helping out, drop me an email at toddhdow [at] gmail [dot] com and I’ll put you in touch with the right people.

Thanks!

Todd

Street wide Garage Sale – Sat May 21 2011

Location:
4418 Dennis Avenue in Beamsville
Google Map

As part of our fundraising for Great Strides, we’ll be running a garage sale on Saturday May 21 2011. We sent out invites to our neighbours today. Ideally, we’ll be able to make it a street wide garage sale, with some of our neighbours participating.

Some things that you can do to help:

  1. Stop by on Saturday May 21 and find a treasure to take home
  2. Spread the word – let others know about this event and get them to stop by on May 21 as well
  3. Hope for sun on Sat May 21!

And, here’s the note that we sent to the neighbours:
Dear Neighbour

We are the Dow family and we live at 4418 Dennis Ave. Our daughter Katie has Cystic Fibrosis.

Cystic fibrosis (CF) is the most common, fatal genetic disease affecting Canadian children and young adults. There is no cure for cystic fibrosis. CF is a multi-organ disease, primarily affecting the lungs and digestive system. A build-up of thick mucus in the lungs causes severe breathing problems. It may be difficult to clear bacteria from the lungs, leading to cycles of infection and inflammation, which damage the delicate lung tissues.

Thick mucus also blocks the ducts of the pancreas, preventing enzymes from reaching the intestines to digest food. People with CF must consume a large amount of artificial enzymes (average 20 pills a day) with every meal and snack, to help digest and absorb adequate nutrition from food.

Katie has to endure 2 to 4 hours of treatment a day to try and loosen the mucous in her lungs as well as take enzymes just to be able to digest her food. The median survival age for someone with CF is 47.7. This just isn’t enough for us and Katie needs a cure.

On Saturday May 21st we are having a garage sale to raise funds for Cystic Fibrosis. Our hope it to make this a street wide sale, as we know that many other streets in Beamsville have had major success with this. We will be donating our proceeds to charity, however, there is no pressure for anyone else to do this. In making this a street wide sale, we can advertise it that way and there will be a lot more traffic coming through the area. As well as advertising in the local paper, we are also hoping to have an article written about the event.

If you would like to participate in this yard sale, please let us know by giving us a call at (905) 563-7195 or emailing us at juliedow@hotmail.com.

And, if you are interested in learning more about Cystic Fibrosis or our family’s story, check these websites:
http://www.cysticfibrosis.ca/
http://breathingasafamily.org/ (our family blog)

Thank you so much!

Sincerely,

Todd, Julie, Noah, Katie and Riley Dow

p.s. If the weather is poor on Sat May 21, we will reserve Sunday May 22 as the rain date for this event.

Team Katie – Great Strides 2011

Folks,

As many of you know, our daughter Katie has Cystic Fibrosis. Katie was diagnosed with CF on September 30 2008. She was 17 months old at the time.

On Sunday May 29 2011, the Cystic Fibrosis Canada will be hosting the annual Great Strides walk for cystic fibrosis. We will be walking and invite you to join us for this annual event.

Please watch our video, which provides a window into our world:

CF, which affects the lungs and the digestive system, 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. Today, half of Canadians with CF are expected to live into their 40s and beyond.

While life span has improved for patients with CF, quality of life is still an issue. Daily treatments, medication, clinic visits and health challenges are always present. When Katie is healthy, we do two treatment sessions a day with her. When she is sick (cold, flu, etc.), we do three or four treatment sessions each day with her.

Here’s a brief list of her regular medicine intake and treatment regimen:
- approx 20 pills a day (enzymes – they help Katie digest food);
- vitamin supplements;
- 2 to 4 Pediasure nutrition supplement drinks each day;
- Nebulizer + medicine – basically, a mist mask that Katie wears twice a day for 20 minutes each time;
- Percussion treatment – 20 minutes of hitting her chest and back – twice a day;
- Inhaled antibiotics – 2 weeks on, 2 weeks off year round;

Plus, the following “specialty items” when she is sick with a cold, flu or other sickness:
- Oral antibiotics;
- Additional medicine in her nebulizer from time to time as her health dictates;
- Additional nebulizer and percussion treatment – typically 3 or 4 treatment sessions a day when she’s sick;

Each year, on the last Sunday in May, friends, family and co-workers of people with cystic fibrosis participate in “Great Strides”, which is Cystic Fibrosis Canada’s largest national fundraising event. Walk with us on Sunday May 29 2011.

To assist, you can:
1. Donate money;
2. Donate and/or collect pledges and Walk with us on Sunday May 29; and/or
3. Recruit others to join us in this fundraising event;

To join our team, “Team Katie”, and walk with us on May 29 at Safari Niagara in Stevensville, click here:
http://my.e2rm.com/TeamPage.aspx?teamID=204804&langPref=en-CA

To sponsor us directly in our fundraising efforts for Team Katie, click here:
http://my.e2rm.com/personalPage.aspx?registrationID=1077314&langPref=en-CA

We thank you for your support. Our wish is that one day, CF will stand for “Cure Found”.

Thanks!

Todd, Julie, Noah, Katie & Riley Dow

CF in the news: “The fear factor in health fundraising” in CMAJ (Aug 2010)

CF is like drowning on the inside

CF is like drowning on the inside

The Canadian Medical Association Journal (CMAJ) recently published an article and two letters (see footnotes at the end of this post) that dispute (one of the letters defends the marketing) the accuracy of the ads depiction of living with CF, and thus, question the effectiveness and appropriateness of the advertising campaigns themselves.

The criticism is mainly directed at protecting CF patients and their families. The main target of the criticism is an ad that depicts CF as being “like drowning on the inside” and the ad shows a child’s face barely held above the water, visibly struggling not to drown. This is most distressing for CF patients and their families, as it puts a very real visual of “what’s to come” to a disease that many live in denial about.

The ad comes in two forms: there is a print version, and there is also a 30 second video version.

Many families that live with CF live in denial that CF will catch up with them. This is a survival tactic that allows patients to live a life of hope, living with the understanding that they may beat the disease. When vivid visuals are shown, it does provide a real-life horrific reminder of what CF patients live with and what they may experience as CF wears away at the lungs.

As a parent of a child with CF, I was horrified the first time I saw this ad. Others close to our family are unable to watch the ad. Most days, we do well to put it out of our minds, hoping that a cure will arrive before disease progresses to a point of no return.

According to the article, “Cystic fibrosis, a fatal genetic disease that affects about one in 1600 people, causes mucus to accumulate in the lungs, affecting breathing.” According to Dr Annie Janvier, a neonatologist and clinical ethicist at Sainte-Justine Hospital in Montreal, Quebec, “people receiving proper medical care would at no time, not even when dying, feel as if they were drowning or breathing through straws.”

In defence, June Pierotti, the director of communications for the Canadian Cystic Fibrosis Foundation, says, “the ads are not intended to mislead, scare or hurt anybody. Adults with cystic fibrosis are consulted on advertising concepts, as well as parents of children with the disease. Most people don’t know much about cystic fibrosis”, says Pierotti, “and hard-hitting advertisements are necessary to get people to realize it is a serious problem that deserves attention.”

In response to the letter referenced above, Karen Gliddon (Hamilton and Area Chapter President, Adult Committee Chairperson and CF patient) and Nathan Fish (Ontario Representative Adult Cystic Fibrosis Committee Advertising Campaign Working Group Member) urged, “Unfortunately, in contrast to other major diseases, cystic fibrosis is not well known or understood by Canadians. It is therefore vital that CF advertising campaigns present a powerful and real depiction of what it’s like to live with cystic fibrosis.” Further, “Prior to launching an advertising campaign, the Foundation consults and receives input from the CF community, including parents of children with cystic fibrosis, adults who are fighting CF personally, and healthcare professionals. As leading members of the CF community who approved the current campaign, we recognize that its hard-hitting message may affect some individuals negatively, and we try very hard to minimize this impact.”

The ethics of these advertising campaigns are unclear. The concern to protect CF patients from such graphic and scientifically debatable depictions of the disease is understandable. Yet, it is difficult to truly understand what CF feels like. Thus, “shock and awe” advertising does raise awareness, and with it, funds that are desperately needed for additional research to help find a cure.

I don’t know about you, but, I’m willing to tolerate a bit of debate over the accuracy of the ads if it means additional awareness. I say kudos to the Canadian Cystic Fibrosis Foundation for their campaign. While disturbing to those of us that live with CF each and every day, I am thankful for the awareness and the benefits that the advertising generates.

My two cents…

Todd

Articles referenced in this post:
The fear factor in health fundraising
Raising money for cystic fibrosis: At what price?
Cystic fibrosis advertising campaigns – a response

Great Strides 2010 Thank You Party

Great Strides 2010 Thank You Party

Great Strides 2010 Thank You Party

Ever since Katie was first diagnosed with Cystic Fibrosis two years ago, the love and support of our family and friends has been phenomenal. We have been extremely grateful to everyone that has offered prayers, words of encouragement, friendship and support as we adjusted to living life with a fatal disease always lurking in the background.

On the last Sunday of May each year, the Canadian Cystic Fibrosis Foundation hosts the annual “Great Strides™: Taking Steps to Cure Cystic Fibrosis” walk. This past May was our second year attending the walk. It was a greet day – the weather was perfect, we had a great turnout and we had a lot of fun. Check out this post for all of the details from the day.

This year, Team Katie had 210 sponsors and 53 people walked with us at Safari Niagara on Sunday May 30 2010. Team Katie raised over $13,000! Check out the Team Katie – Great Strides 2010 Results! blog post for a full summary of what the team accomplished this year.

To say thank you and to celebrate the success of this year’s walk, we hosted a thank you party for everyone that walked with us this year. The party was held at our house on Sunday August 29. You can see pictures from the event at this flickr slideshow.

We would like to say thank you to everyone that walked with us, donated to this year’s Great Strides walk and/or offered encouragement to us this year. We are truly grateful for the generosity that everyone has shown.

Much love,

Todd, Julie, Noah, Katie & Riley

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