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Ted Talks - ALS Ice Bucket Challenge

11/29/2014

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Buddy is much more comfortable with my power chair than I am!

When 27-year-old Pete Frates injured his wrist in a baseball game, he got an unexpected diagnosis: it wasn’t a broken bone, it was ALS. Better known as Lou Gehrig’s disease, ALS causes paralysis and death—there is no cure. And still, Pete saw an opportunity to drive awareness about the disease. In a brave talk, his mom Nancy Frates tells the story of how the family developed the ALS Ice Bucket Challenge and took great pleasure in seeing everyone from Justin Timberlake to Bill Gates take part. If you accepted the challenge, please take the next step: share this talk as you did your challenge video.


Inspiring family, I am so appreciative of their tenacity.

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Happy Birthday Travis

11/25/2014

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Happy Birthday to the love of my life!
I am so thankful for you every day and my love for you makes me want to burst!
Thanks mom & dad Skinner for raising such a kind, loving, fun, and incredible human being.
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Ice Bucket Announcement

11/19/2014

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Thank you all for giving me hope, when I once had none...

ALS SOCIETIES ACROSS CANADA COMMIT $10 MILLION TO ALS RESEARCH AND ANNOUNCE NEW PARTNERSHIP WITH BRAIN CANADA FOR MATCHING RESEARCH FUNDING 

This summer, with a bucket, ice and water, you have transformed ALS - a disease that before the ALS Ice Bucket Challenge was largely unknown.  Because of you, your recent gift through the ALS Ice Bucket Challenge is enabling the ALS Societies across Canada to inject $26 million into the ALS community over the next three years. 

Below is the formal announcement given today in Ottawa and distributed to the press. It outlines where your dollars will be used, as well as a special partnership, that we believe will contribute to changing the future of ALS. 

On behalf of ALS Societies across Canada, we will continue to be unwavering in our commitment to make ALS a treatable, not terminal disease and to support Canadians currently navigating through this very difficult journey. 

Thank you for everything you have done. We welcome you into the ALS community and look forward to your future support to continue to change the reality of ALS. 

The Team at ALS Canada

http://vimeo.com/107943247

260,000 CANADIANS RAISE OVER $16 MILLION THROUGH ALS ICE BUCKET CHALLENGE
ALS SOCIETIES ACROSS CANADA COMMIT $10 MILLION TO ALS RESEARCH AND ANNOUNCE NEW PARTNERSHIP WITH BRAIN CANADA FOR MATCHING RESEARCH FUNDING 


OTTAWA (November 19, 2014) - ALS Societies across Canada are pleased to announce the ALS Ice Bucket Challenge in Canada raised $16.2 million due to the generosity of more than 260,000 Canadians. This represents a record for donations to the ALS community in support of Canadian living with ALS and ALS research from one event.

ALS Societies will invest $10 million in ALS research and $6 million in programs that deliver critical support to Canadians living with ALS.

The ALS Societies are also proud to announce that the funds for ALS research will be matched on a 1:1 basis through a new research partnership with Brain Canada, bringing the total investment in ALS research to $20 million. This is the largest one-time investment in the ALS Canada Research Program in history and has been made possible by the donations received through the ALS Ice Bucket Challenge and the federal government's Canada Brain Research Fund. The research projects selected for funding will be announced starting as early as December 2014.

"We are incredibly grateful for all of the support and awareness for ALS in the last four months as a result of the ALS Ice Bucket Challenge," says Tammy Moore, CEO, ALS Canada. "We know donors and our community will be pleased that we have demonstrated strong stewardship of the gift we have received, and that, with the matching research funds from Brain Canada the total impact of the ALS Ice Bucket Challenge is $26 million. We want to thank all of our donors and assure you that we understand how important this is to people and their families living with ALS."

"On behalf of the Government of Canada, I would like to thank all those Canadians who participated in the ALS Ice Bucket Challenge for their support for people living with ALS and their families," said Rona Ambrose, Minister of Health. "I am pleased to say that the ALS Societies investment in research is being matched by the federal government's Canada Brain Research Fund so that the donations from Canadians will be leveraged to their fullest potential. This combined investment is certain to have a transformative impact on ALS research ."

"Brain Canada is proud and excited to partner with ALS societies across Canada in this exciting new research endeavour", said Inez Jabalpurwala President and CEO, Brain Canada Foundation and NeuroScience Canada Partnership. "Combining our research efforts this way will without question accelerate the progress of finding a treatment and eventual cure for this terminal disease, and for other neurodegenerative diseases which have similar underlying mechanisms." 

About ALS
ALS, amyotrophic lateral sclerosis is a neurodegenerative disease where the cells in the body that control movement die. The "living wires" which connect a person's brain to their muscles degenerate, leading to a loss of mobility and eventual paralysis,, changes or complete loss of speech and eventually the ability to breathe. ALS is a terminal disease that has no cure, and no effective treatment. Approx. 2,500-3,000 Canadians are living with ALS. It is estimated 1,000 Canadians will die because of ALS and 1,000 will be newly diagnosed each year. The average lifespan is two to five years.

About ALS Societies across Canada
The ALS Societies across Canada are ten independent organizations in each province, working collaboratively in the dedication to provide programs and services to Canadians living with ALS, to fund research and to increase awareness amongst the public, media and government bodies. The ALS Ice Bucket Challenge funds were allocated through this national group, representing each individual province. The funds contributed towards research, is administered through the ALS Canada Research Program.

About ALS Canada Research Program
ALS Canada is a national organization responsible for the ALS Canada Research Program - funding peer-reviewed research grants and fostering collaboration amongst Canadian researchers, helping to nurture new ideas and build capacity. The program accepts applications for funding from Canadian ALS researchers. In 2014, ALS Canada enlisted an International Peer Review Panel consisting of seven world-class ALS researchers who evaluate and rank applicants to ensure donated funds support the best ALS research.

About Brain Canada
Brain Canada is a national, charitable organization with the vision to understand the brain, in health and illness, to improve lives and achieve societal impact. Brain Canada is achieving its vision by:
* Increasing the scale and scope of funding to accelerate the pace of Canadian brain research;
* Creating a collective commitment to brain research across the public, private and voluntary sectors;
* Delivering transformative, original and outstanding research programs.

About the Canada Brain Research Fund
The Canada Brain Research Fund is a public-private partnership designed to encourage Canadians to increase their support of brain research, and maximize the impact and efficiency of those investments. 

Brain Canada has committed to raising $100 million from private and non-governmental sources, which will be matched by Government on a 1:1 basis. The Government of Canada committed up to $100 million over six years (2011-2017) to establish the Canada Brain Research Fund. This fund supports Canadian neuroscience research and advances knowledge and treatment of brain disease and mental disorders, including ALS . The Fund was announced in federal budget 2011, which proposed to "allocate up to $100 million to establish the Canada Brain Research Fund, which will support the very best Canadian neuroscience, fostering collaborative research and accelerating the pace of discovery, in order to improve the health and quality of life of Canadians who suffer from brain disorders."

For more information about Brain Canada and the Canada Brain Research Fund: www.braincanada.ca 

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For more information, on the ALS Canada and the partnership with Brain Canada, contact:

James Kenny, Senior Consultant, Hill + Knowlton Strategies, James.kenny@hkstrategies.ca 613-786-9958

Rebecca Grima, Director of Marketing and Communications ALS Canada, rg@als.ca 905.248.2052 x234
 



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Snow

11/17/2014

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Snow has officially arrived in Ottawa, thankfully our winter tires are being put on the car tomorrow!  November always feels a little too early for me, I like it best when the first snow is on Christmas Eve!  Although with snow there is always hockey and I am happy to report that my team is #1 in the league!  Go Habs Go!  Dad is back home in Montreal recovering from his back operation.  Travis & I are cozy at home enjoying our fireplace & making quiche.  Looking forward to celebrating his birthday next week.  I am happily spending this week meeting up with old friends (Cindy :)), and new friends at Brittany's for book club (The Little Old Lady Who Broke All the Rules) and a Jamberry ALS fundraiser.


An Unprecedented Announcement: the ALS Ice Bucket Challenge - Wednesday Nov 19

On Wednesday November 19, 2014 ALS Societies across Canada will be making an unprecedented announcement about the funds generously donated by Canadians through the ALS Ice Bucket Challenge. We will be making the official announcement at a press conference in Ottawa at 10:30a.m. At this press conference we will be sharing the phenomenal impact Canadians across the country have made for the ALS community. Because of their generosity through the ALS Ice Bucket Challenge, amazing things are happening and we can’t wait to share the details with you.  

Following our big announcement we will be hosting a reception with Members of Parliament on Parliament Hill to tell our story, discuss ALS research and care in Canada and keep the incredible momentum of the ALS Ice Bucket Challenge going. 

We look forward to this next chapter and are excited to share this news with you.
ALS Canada

Our snowy view
Spinach & Cheese Quiche
Travis brings me flowers
Nail wraps that do double duty - raise awareness and raise money! kristyschoyen@gmail.com to order these custom designed "ALS Hope" nail wraps
My Favourite Saying, I'm still working on it!
My Hockey Team
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Keep Calm and Kick ALS

11/12/2014

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Thank you so much to my KKG sisters for their awesome fundraiser:

Kappa Kuisine 2014! 

Yesterday evening was our annual Kappa Kuisine, which was a great success! As always, we had a delicious buffet-style dinner and chose to donate all proceeds ($1,000!) to the Amyotrophic Lateral Sclerosis (ALS) of Quebec. After Carol Skinner, an alumna of ours, was recently diagnosed with ALS, this organization is dear to our sisters' hearts . A huge thank you to the brothers of Sigma Chi for hosting our event at their house. Also, thank you everyone for coming out -- we hope to see you next year 
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Lest We Forget

11/10/2014

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Thinking of Dad as he goes in for his back operation tomorrow, we're hoping he can get back to golfing this summer!

Travis was lucky enough to get a few days off in a row so we had date night and went to see "Nightcrawler", great performance by Jake Gyllenhaal, very creepy!  Enjoying Thai food as we plan for our trip to Asia in April.



Honouring our veterans tomorrow:

IN FLANDERS FIELDS POEM

By Canadian Lieutenant Colonel John McCrae 

In Flanders fields the poppies blow
Between the crosses, row on row,
That mark our place: and in the sky
The larks still bravely singing fly
Scarce heard amid the guns below. 


We are the dead: Short days ago,
We lived, felt dawn, saw sunset glow,
Loved and were loved: and now we lie
In Flanders fields! 


Take up our quarrel with the foe
To you, from failing hands, we throw
The torch: be yours to hold it high
If ye break faith with us who die,
We shall not sleep, though poppies grow
In Flanders fields


Composed at the battlefront on May 3, 1915 
during the second battle of Ypres, Belgium


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ALS Fundraisers

11/5/2014

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Appreciating Fall
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Practicing driving in my new power tilt chair
Travis & I are settled back at home after our many travel adventures.  We are spending our time with friends and family as much as possible.  Though my physical strength is weakening, we are doing our best to "make moments matter".
What helps me during the difficult days is the constant support I am receiving from people.  Many of you know I am a proud Alumna of Kappa Kappa Gamma at McGill University (Delta Delta Chapter).  The current sisters have organized a philanthropic event this Friday in Montreal to support the cause of those living with ALS.  Here is the blurb to their event.  Have a blast ladies!!! 

Kappa Kuisine is this Friday evening! It's a delicious all-you-can-eat dinner for only $10 -- all of which will be donated to the Amyotrophic Lateral Sclerosis (ALS) Society of Quebec. After an alumna of ours was recently diagnosed with ALS, this organization is dear to our sisters' hearts.

Come and support a great cause with your friends, family, and the women of McGill's KKG!
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Kristy Joy Schoyen is hosting an online Jamberry Fundraiser for ALS.  Check it out:


Did you absolutely love that ALS Icebucket Challenge? Do you wish you could do more? Well, have we got a challenge for you! (hint, this one involves shopping).

The Fabulous Brittany Morris will be hosting an online Jamberry Fundraiser. This way you can have fun shopping online and support a worthy cause through ALS Canada at the same time. Can it get any better than that, you ask!?! Well, I say it can! There are also door prizes!

Let me tell you how it works... 30% of the product purchases will go directly to ALS Canada on behalf of the beautiful and Magnanimous Carol Skinner.

Never heard of Jamberry, you say?... Check out the products by heading over to: kjs1980.jamberrynails.net. 
On the site they have videos showing how to apply/remove the nail wraps, links to the catalogue and the 300+ designs, and info on the Jamberry company.

You can place orders in one of two ways:
1) Order directly from the website - making sure to link your order to Brit's party (there's a drop down for that);

OR

2) Email your order to kristyschoyen@gmail.com - and i'll make a group order on November 22nd and we will all save on shipping.

YOU CAN START ORDERING ANY TIME BETWEEN NOW AND NOVEMBER 22!

If you have any questions please don't hesitate to email me at kristyschoyen@gmail.com
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It is truly heartwarming that people are rallying on my behalf to fight this terrible illness.  From the bottom of my heart, THANK YOU!!!!
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    Author

    Carol Jean Skinner (née Sharman)
    born October 19
    lives in Ottawa, Canada

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carol skinner  - rolyskinner@gmail.com
travis skinner - skinnertravis@gmail.com