#silentfor65

14 10 2014

Grassroots, community, and hope. #silentfor65 is a grassroots movement. At midnight tonight I will join others in showing my support to the CF community by going dark and turning off all social media for 65 hours. A great reminder and challenge to live in the moment and make the most of each and everyday. I will also be making a donation to Cystic Fibrosis Canada not just for my own daughter – but for all the wonderful people we know fighting CF.

https://cf.donorportal.ca/Donation/InHonour.aspx?L=en-CA&G=212&F=1310&T=INHON

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Elinaisms- Santa’s Sleigh

6 10 2014

Daddy- “Elina, do you think you’d like to ask Santa for a trip to Disneyland?”
Elina- “No way, it would be WAY to cold for me to ride in his sleigh. I would be so cold. Brrrrrr”

LOVE this and need to remember this time for always.





Papa’s Music

26 06 2014

Elina – This is the Eagles
Me- How do you know about the Eagles?
Elina- Papa told me about Hotel California





Great Strides in the right direction

24 06 2014

Breakthrough day for CF and this time for Elina’s mutations. There is still much work to be done and there are still many questions that need answers. But this is a big hopeful step in the right direction. This is what our fundraising dollars have accomplished.

It is a day for hope, a day to dream about possibilities, a day to be thankful for fundraising and technology and for me a day of cautious optimism.

Every step forward is a step forward and each new step researchers are taking has the increasing possibility of drastically changing Elina’s life and all others with CF for the better.

Thank you to all of the people who have supported Elina’s Entourage so far – THIS is what you are walking for, raising money for – this kind of hope and this kind of a difference.

A big step forward on our journey to find a cure or better control for people living with cystic fibrosis.

http://www.forbes.com/sites/matthewherper/2014/06/24/in-a-victory-for-gene-research-drugs-clear-lungs-clogged-by-cystic-fibrosis/

http://www.nytimes.com/2014/06/25/business/international/vertexs-two-drug-cystic-fibrosis-treatment-shows-promise-in-clinical-trials.html?_r=0

http://www.cnbc.com/id/101783126

http://online.wsj.com/articles/vertex-says-late-stage-cystic-fibrosis-treatment-studies-meet-endpoint-1403610720





Elinaisms

14 06 2014

Me- “So, Elina will you help clean the house today?”

Elina- “I’m not that kind of girl!”

Me- “Well what kind of girl are you?”

Elina- “the party kind.”

oh no.





Thank you from Elina

26 05 2014

I did not tell her what to say. I simply asked her what she would like to say to people who supported her on her “parade” which is also called Great Strides. A few words from our Captain of Elina’s Entourage. She’s a girl full of love.





Thank you!

25 05 2014

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There are so many people we need to say thank you to. This fundraising season has been an incredible one. I don’t have the final number of how much we raised, but it also doesn’t really matter. We have seen so much kindness and generosity this fundraising season. The number at the end isn’t what matters- but if anyone is keeping track it was around $6,500 that will go to a cure or better control for cystic fibrosis. An outstanding amount, in my opinion.

Elina is our light, our life, our fight and our everything.  It is so amazing to us that people share that journey with us.  People we know and care about, and some people we don’t even know. This is one of the wonderful things about cystic fibrosis, seeing so much good in other people. Elina doesn’t care how much money we raised, she doesn’t really even understand why we are doing it.  But today, was her day, today was all about her and she LOVED being the centre of attention and “being the leader of her parade.”  The highlight for me was her saying “I feel so special”.  That’s kind of the point.  She’s old enough now to better understand how loved she is and loved by so many people.  I think that might be why she has so much love to give to others.

This year we sold Salisbury Greenhouse gift cards. It was a great fundraiser and we raised $415. We are SO grateful to everyone who bought, promoted and helped sell gift cards. We would especially like to thank a wonderful woman named Kelly who purchased a gift card and then gave it back to Elina. Not only was it a wonderful gesture, but she wrote such a kind and lovely note. Really, really nice. Here is what Elina built using the gift card.

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We also had a wonderful friend run a yoga class and 100% of the proceeds from the yoga went to our fundraising total.   We made $232 dollars from the yoga fundraiser, thank you so much Jen- you are an amazing yoga teacher.

We had a wonderful time today, as Elina calls it, at her parade. The walk was beautiful and we were fortunate that it did not start raining until after the walk was over.  It was a beautiful walk in the forest. I am very grateful to my parents for bringing their motorhome and giving us a place to eat our lunch, visit and keep us dry.

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Thank you so much to the organizing committee and everyone who does so much at the Edmonton Cystic Fibrosis chapter. Thank you everyone who chose to donate their money to this cause. I know everyone has something they are passionate about, and it means so much to us that you have chosen to support cystic fibrosis.

 

There is just so much to be thankful for. Love, love, love. I saw so much love today.

 

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