Technology and CF research

December 6, 2011 Leave a Comment

CF pops up in the most unlikely of places from time to time… This morning, I was reading an article pertaining to high volume compute clusters and I stumbled across a reference to Microsoft Research and their ties to medical research, specifically Cystic Fibrosis.

Microsoft funds a research centre that employs a ton of leading academics in the pursuit of computer science applications that may eventually make their way into Microsoft products.

In this case, the research project is called “Unraveling Protein Folding: High-performance computing Helps Shed light on diseases“. This particular research project is using large volume computer resources to simulate protein folding, which is at the biological root of Cystic Fibrosis, as well as many other diseases including Alzheimer’s, Parkinson’s and many forms of cancer.

The hope is that this research will uncover the causes of proteins that fold inappropriately, thus leading to some of the conditions mentioned above. From there, treatments may be identified to help correct these flawed protein behaviours.

At a Glance
Project: Molecular Dynameomics
Location: University of Washington, Seattle
Project Principal:
Valerie Daggett, professor of bioengineering, University of Washington
Web Sites:
www.dynameomics.org
depts.washington.edu/daglab
Microsoft Technologies:
Windows Compute Cluster 2003, Windows Server 2008, SQL Server 2008,
Visual Studio® 2008, Internet Information Services 7

I get really excited when I see my professional world (I’m an IT geek) and my personal world collide. Hopefully this will help lead to some tangible benefits for those that suffer from these horrible diseases.

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Team Katie – Great Strides 2011 results!

May 29, 2011 Leave a Comment

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

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Great Strides 2011 – the walk is this weekend!

May 26, 2011 Leave a Comment

Great Strides 2011 - Team Kaite

Great Strides 2011 - Team Katie

Folks,

After much fundraising, the walk has finally arrived! This Sunday is Great Strides and here are the logistics for this Sunday:

Date/Time to meet: 9am on Sunday May 29
Location: front entrance of Safari Niagara in Stevensville (link to Google map w/ directions)
For those with a paper map or GPS system, here’s the address:
2821 Stevensville Road
Stevensville, Ontario
L0S 1S0
http://www.safariniagara.com/

On walk day, make sure you bring:
 * your “manage online donations” and “manage cash and cheque donations” printouts;
 * your Great Strides t-shirt;
 * dress for the weather – the walk will proceed rain or shine;

Note: if you have received a t-shirt this year, wear it (Julie should have been in touch with you if a t-shirt is available for you). If you didn’t register in time this year and have a t-shirt from last year, please wear it. And, if you don’t have a t-shirt at all, wear a red t-shirt if you have one. (and, let’s make sure you get registered early next year so that you are included in the t-shirt order)

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:

  1. 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);
  2. 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;
  3. 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: (905) 931-0945

Thanks for your commitment to help us make CF mean Cure Found!

See all of you on Sunday!

Todd, Julie, Noah, Katie & Riley

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Breathe Easy Nebulizer Mask Holder

May 6, 2011 Leave a Comment

Breathe Easy Nebulizer Mask Holder

Breathe Easy Nebulizer Mask Holder

All CF parents out there, you must check out this product: The Breathe Easy Nebulizer Mask Holder

What a great device! Julie found this online and ordered one. Order total = $31.50 which includes shipping. The device even came with an extra “Bubbles the Fish Pediatric Aerosol Mask”, which is a bonus so that we can rotate masks more often.

To use it, all you do is put the strap on your child’s head, adjust the fish mask on the face and then attach the nebulizer to the front of the mask. Easy as 1 2 3.

The product creator, Melissa, was motivated to make this mask holder for a friend’s child, who has CF. According to Melissa, “This mask holder was created for a friend of mine to help with her son’s breathing treatments. Her little boy has Cystic Fibrosis and must have multiple breathing treatments every day. She struggled with getting the nebulizer mask, with its flimsy elastic strap, to stay on his head securely.”

And, as an added bonus, Melissa will also donate a portion of any purchase referred by Breathing As A Family to Cystic Fibrosis Canada! Simply mention that you heard about this here (and mention Team Katie) during the checkout process (there is a spot for additional comments on Etsy when you place your order) and Melissa will do the rest.

Thanks to Melissa (mktdesigns on Etsy) for providing such a great product.

Please pass this along to any other CF families that you know!

Todd

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Corporate Sponsors Needed for Team Katie!

May 5, 2011 Leave a Comment

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

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

May 4, 2011 Leave a Comment

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

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Street wide Garage Sale – Sat May 21 2011

May 1, 2011 Leave a Comment

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.

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Team Katie – Great Strides 2011

March 29, 2011 1 Comment

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

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Happy New Year!

January 13, 2011 Leave a Comment

Yes, I know it’s already January 13th. I’m a bit late on my first post of the new year. :-)

The last few months have been rather hectic. Plenty going on. And yes, I have neglected our blog for far too long. For that, I apologize.

So, to get everyone up to speed, here’s what we’ve been up to.

Dow Family 2010

Dow Family 2010

October: Plenty of good times. We checked out “Touch a Truck” in Niagara. We celebrated Noah’s 5th birthday. We visited Bry-Anne Farms in Fenwick, Ontario. The kids had a blast! And of course Halloween was fun.

November: Not much to report… Got ready for Christmas. Kept busy with work and play.

December: Busy month. We started the month with a sick household. We think that the cold/flu/whatever it was hit us early this year, affecting all of us at one time or another. Katie seemed to keep healthiest – I suspect that her daily CF treatments helped keep her lungs clear, and thus, helped to keep her healthy as well.

Feeding the sheep

Feeding the sheep

We had a special Christmas this year as well. We went to Ottawa to visit with my sister Stacey’s family: Stacey, Paul, Ben & Max. They have a bit of a hobby farm at their place. Needless to say the kids loved it. They even got to feed some sheep!

From there, we went to Julie’s extended family Christmas, which was hosted by Julie’s Uncle Steve and Aunt Ingrid in Ottawa this year. We had a great time there as well. Plenty of family time and we got out to see the Museum of Civilization in Hull, Quebec as well.

Which brings us to January. Plenty going on now as well. I’ll update more on that in my next post. Watch for that post within the next couple of days.

And yes, that book is still on my list. I’m working on it.

Talk soon!

Todd, Julie, Noah, Katie & Riley

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I’m writing a book – “Cystic Diagnosis”

September 27, 2010 8 Comments

Katie, Noah & Riley - Aug 2010

Katie, Noah & Riley - Aug 2010

We found out that our daughter Katie had CF on September 30 2008. Katie was 17 months old at the time. 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.

To seasoned CF veterans, I’m sure we’re still “rookies”. But, we are insiders nonetheless. And we are recent insiders. Thus, we have a unique perspective and a unique chance to help others.

I’m compiling my notes into what I envision to be a book that will provide an overview of our first year living with CF. It will share our personal story. It will share resources that we’ve found helpful. It’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, I’d like to provide a handbook that will comfort other families that have just learned that a loved one has cystic fibrosis. And, I’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.

Who knows… maybe I’m crazy. Maybe I’m overly ambitious. But, I looked high and low for such a book when Katie was first diagnosed, and, I couldn’t’ find that book. If I could provide something even remotely helpful, then I will have accomplished my goal.

Here’s the basic outline of the book that I’m thinking of writing:

1. Our Story – Intro
2. Practical Matters – Our first clinic visit
3. Lifestyle changes:
* Routine
* Family priorities
* NO SMOKING!
4. Existential angst (optonal philosophy chapter)
5. A depressing reading list
6. Hope:
* Medical research
* Community / Support groups
* The Internet Community
7. Charity work
8. Carrying on & Living life
9. One year on – where we’re at
10. Ethics:
* Having more children after a CF diagnosis
* Universal health care
* Etc
11. References:
* Books
* Websites
* Charities
* 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.

Thanks,

Todd

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