May is Cystic Fibrosis Awareness Month

Folks,

Just wanted to remind you that May is Cystic Fibrosis Awareness Month. Please do your best to help raise awareness to help fight CF. I'm personally raising awareness by blogging, fundraising and participating in the Great Strides walk on Sunday May 30 2010 at Safari Niagara in Stevensville Ontario.

What are you doing to help raise awareness and to help fight CF? Drop your comments below. And, send others to this site as well.

I haven't posted much over the last month. That's gonna change for May. I'm putting the finishing touches on a series of posts, entitled, "Cystic Diagnosis". In this series, I'll be sharing our personal diagnosis story. When we found out that Katie had CF. The process that took place to verify things. How we responded. etc.

And, I'm also going to fit in a post series on bioethics. As many of you are aware, we're expecting our third child. Our daughter has CF. That means that Julie and I are both carriers. That means that Dow baby #3 has a 1 in 4 chance of having CF. Plenty of thought went into the decision to have a third child. We'll share a bit of our thinking on that one. And, Dow Baby #3 is due this month (due date = May 27 2010). So... this bioethics series will be especially timely.

Thanks and stay tuned!

Todd

Tribute to Eva Markvoort

As many in the CF community know, we lost a great CF champion this past week. Eva Markvoort died this past weekend of CF-related complications at the age of 25. Eva has been a courageous and uplifting CF patient who demonstrated hope and love in the way that she strove to raise awareness of Cystic Fibrosis in hopes of finding a cure and to help raise awareness and support for organ donation.

Eva was the subject of the documentary 65_RedRoses, which is an award-winning documentary. This documentary has been featured at HotDocs in Toronto and the Vancouver Film Festival. The documentary has been broadcast on CBC as well. This documentary will be broadcast again this Friday April 2 at 4am and 8pm. For more details, see this site: http://www.65redroses.com/

The documentary chronicles Eva's deteriorating health condition from Cystic Fibrosis and her wait for a new set of lungs. The documentary highlights the difficulties of cystic fibrosis, the challenges of organ transplant and the hope for new life that comes when organs become available - donations made available by the loss of another's life. The documentary ends on a positive note, showing Eva participating in a Dragon Boat race, seeing life in front of her that had not been possible before her double lung transplant.

Two years after her transplant, which occurred in late 2007, Eva's health began to deteriorate again. This time, her body was rejecting the new lungs that had prolonged her life. Eva held on, blogging about her deteriorating health, her thoughts, her fears, her loves and her dreams.

This past Saturday March 27, at 9:30am, Eva died. This short post announced it to those that were following her struggles on her blog, 65redroses.livejournal.com:
"Our beautiful girl died this morning at 9:30. She is at peace. Will write more later."

Eva's legacy will be a strong one. Eva has been a lightning rod of activism and awareness for a disease that science has made great strides against in the last 40 years. There is still much to do to beat this disease, but Eva, I thank you for all that you have done to combat this disease and to provide hope to the many that still suffer from this terrible disease.

To honour Eva's life, please consider making a difference:

1. Sign your organ donor card.
2. Share Eva's story - 65_redroses trailer
3. Celebrate Eva's life: Join the facebook group

Thank you Eva. You are greatly missed.

Todd

Breathe by Matt Scales - song lyrics

Our Team Katie video for 2010 features the song Breathe, from Matt Scales, a CF patient who died from the disease in 2007 at 28 years of age.

Matt's personal struggle with CF made the song especially poignant, given his intimacy with the disease.

You can view more information about Matt and you can also download an mp3 copy of the song as well as an mp4 video of the song at this URL: http://www.cfvoice.com/info/breathe/index.jsp

Here are the lyrics to the song, Breathe:

Breathe
By Matt Scales
Through my eyes
I see you
Staring at me
All the time.
So I wish
That it would leave
My body.
I wish I could breathe
Like you, oh, breathe
I know the answer’s out there.
So won’t you help me, please?
Chorus:
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
I see the future.
It seems so clear.
That one day I’ll breathe like you.
Then I think that
I’m all right
But it keeps changin’
Like the weather.
It’s not up to me
How I feel
How I feel
Inside.
I wish I could breathe
Like you, oh, breathe
I know the answer’s out there.
Won’t you help me, please?
Chorus:
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
I see the future.
It seems so clear.
That one day I’ll breathe like you.
I wish I could breathe
Like you, oh, breathe
I know the answer’s out there.
Won’t you help me...please?
Cause one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
I see the future.
It seems so clear.
That one day I’ll breathe like you…like you.

Original “Breathe” Composition © 2001 Matt Scales and Barnaby Pinny.

Community

Spread the word and help raise awareness.

1. Watch and share our Great Strides 2010 video on YouTube.
2. Join our Great Strides 2010 Facebook group.
3. Post one of these badge images on your website:

Small Button - 120x60:


Badge - 260-175:


With these badges, you can link back to:

1. Our blog: http://www.breathingasafamily.org/ or
2. Our fundraising page: http://www.breathingasafamily.org/2010/04/great-strides-2010-how-you-can-help.html

Thanks for helping us raise awareness for this important cause!

Todd, Julie, Noah & Katie

Great Strides 2010 - how you can help

There are three ways that you can help:

1. You can walk with us on May 30 2010;
2. You can donate; or
3. You can offer motivational support;

If you would like to join Team Katie and raise funds for this very worthwhile cause please click on the link below:
http://my.e2rm.com/TeamPage.aspx?Lang=en-CA&TSID=261808

If you would just like to donate without joining please click on this link:
Donate to Julie:
http://my.e2rm.com/personalPage.aspx?SID=2476855

Donate to Todd:
http://my.e2rm.com/personalPage.aspx?registrationID=820204

Let's make this year an even better one!! If you are unable to make a financial donation, please consider our family in your thoughts and prayers. Cystic Fibrosis is something that we deal with on a daily basis. It is these fundraisers that give us tremendous hope for the future!

Thank you for your support!

Julie, Todd, Noah and Katie

Great Strides 2010 fundraising and awareness

I just want to say thank you to the many people who have donated or signed up to walk with us on Sunday May 30 2010. You have been very generous and we appreciate all of the love and support.

And, I'd like to share a recent blog post that very succinctly summarizes the video as "a prayer": http://thefirstmennonitechurch.wordpress.com/2010/03/17/choices-in-iworld/

Thanks Carol for helping to share our message and for recognizing it as such.

Talk soon!

Todd