Live Love Laugh with Carol
Contact Carol
  • Home
  • Love Story
  • ALS
  • Blog
  • Tips & Tricks
  • Gallery
  • Travel
  • Media
  • Calendar
  • DONATE

My Daughter Has ALS

1/26/2018

5 Comments

 
Picture
That is my Grandad, Arthur Sharman on the camel!
Dad spent months writing a paper on a father's perspective on having a daughter living with ALS.  We would love to share it with you, click on the button below to read the online copy or feel free to download.



My Daughter Has ALS
A Father’s Journey 


Peter M. Sharman
Ottawa, Ontario Canada 

January 2018

Table of Contents
1) Introduction
2) Our Daughter Carol
3) ALS and the ALS Society of Canada
4) Carol’s Diagnosis and How She is Today
5) What I Know but Don’t See Daily
6) My Thoughts After 4 Years Since Diagnosis 7) Her ALS Society Activity Today
8) Family and Friends
9) Fundraising and Government Support
10) Research
11) What Can I Do for Her Now?
12) Summary 


My Daughter Has ALS
my_daughter_has_als_final2.pdf
File Size: 22315 kb
File Type: pdf
Download File

5 Comments

5th Annual Curling for Carol Bonspiel

1/22/2018

1 Comment

 
Picture
Saturday March 17, 2018
11:00 AM – 4:00 PM EDT

Tickets:  $30

Nepean Sportsplex
1701 Woodroffe Avenue 
​Ottawa, ON K2G 1W2
Register
Join us for the 5th Annual Curling for Carol Bonspiel! Carol Skinner was diagnosed with ALS at the age of 41. You can learn more about her story and how she is using her time to advocate for others living with ALS at www.livelovelaughwithcarol.com/blog. Many people are not aware that only select pieces of equipment are funded by OHIP and even then, only partially. The average person diagnosed with ALS will spend more than $150,000 of their own money on vital equipment during their battle with ALS. That is why we come together for a great day of curling, give away prizes and draw for exciting raffles to raise much needed funds. 50% of the proceeds goes directly to ALS Canada Research Division and 50% goes toward the puchase of necessary equipment such as a wheelchair and in-home mobility aids. Curling is a great way to support those with ALS as it is one of the most accessible sports out there and a true Canadian classic. Wheelchair curling is even an olympic sport. That said, you do not need to have ever curled before to come out and have a great time. Register as a single and join a team or sign up as a team of 4.

For more information about ALS go to: https://www.als.ca/about-als/what-is-als/

FAQs
What is a Bonspiel?
A bonspiel is tournament. Teams will play each other and "compete" for the top spot of the day. The curling community has always used Funspiels as a way to introduce people to the sport and raise money for charity.

What do I wear to the event?
Wear comfortable, warm clothing such as athletic or yoga pants, no jeans. Dress in layers. Half of the event time is in the rink and half takes place in the restaurant.

What equipment do I need to bring?
Bring a pair of clean indoor only/gym running shoes. If you have a slider or a shoe grip, you can use it but it is not necessary. Brooms are provided, including brooms for participants in wheelchairs.

What if I don't know how to curl?
That's ok. At Funspiels you will find that most peopel have never curled in their life and some will have curled a couple of times but would still call themselves non-curlers. You will still be able to curl even when it's your first time. You will be able to throw rocks, sweep them into the house and every once in a while do a spectacular take out!!

What if I can't find enough people to make a team?
That's ok. Several people will be in the same boat as you. We will match people together to create full teams. We will make every effort possible to match non-curlers with those who have a little experience so that everyone can fully participate and have fun doing it.

Is their food provided at the event?
Yes, there is a pizza lunch provided with your registration. There are also snacks and beverages available for purchase.

Are there ID or minimum age requirements to enter the event?
No ID or minimum age is required unless you would like to purchase alcohol at the cash bar. Children under 10 years of age will have difficulty in throwing the 40lb curling stones but are welcome to particpate in conjunction with their parents/team. 

Is the event wheelchair accessible?
Yes, both the event and venue are wheelchair accessible. There is a ramp on the ice for wheelchairs and accessible brooms are available.

What are my transportation/parking options for getting to and from the event?
OC Transpo bus routes 95, 97 and 63 will take you to the Nepean Sportsplex. Consult octranspo.com for more information.
Free parking for those who drive. 

How can I contact the organizer with any questions?
Contact Robin MacIntyre at macintyre2012@hotmail.com for more information.

Do I have to bring my printed ticket to the event?
We do appreciate you bringing your printed ticket to help with registration; however, if you cannot print it or forget it at home you will still be admitted as long as we have your name and information.

Is my registration fee or ticket transferrable?
Yes. It is helpful for the organizer if you can forward this information as soon as possible.

Is it ok if the name on my ticket or registration doesn't match the person who attends?
Yes, that is fine.
​
Curling for Carol
Organizer of 5th Annual Curling for Carol Bonspiel - ALS Fundraiser
When our coworker, Carol Skinner, was diagnosed with ALS, we knew we wanted to develop a fundraiser that would both raise funds to help offset the enormous costs that would be coming her way but to also spread awareness throughout our community.  We are very pleased that 50% of the proceeds go directly to ALS Canada Research Division.  When funds are earmarked for research, none of the funds are diminished by administrative costs.  We are hoping that this is the year we will be able to surpass $10,000 raised by this event.

ALS research is not funded by the federal government.  Funds are only generated by fundraisers across Canada.  For more information on how ALS spends your money go to:  https://www.als.ca/research/als-canada-approach/
Location

Nepean Sportsplex
1701 Woodroffe Avenue 
​Ottawa, ON K2G 1W2
1 Comment

Online Clinical Trial

1/10/2018

3 Comments

 
Picture
Since my diagnosis, I have been interested in participating in clinical trials for ALS.  Not for myself, I understand that 50% of the trials are placebo, and we are still a ways off for any effective treatment of ALS (though I do believe in miracles!).  But I have always felt that you cannot complain about anything without being part of the solution!  I actually qualified for a clinical trial in Montreal, however, it meant travelling to Montreal every two weeks and I could no longer travel on my own.  The good news is that Ottawa will be getting a "Centre of Excellence" with an ALS specific neurologist who will initiate trials in Ottawa, though we have been waiting for this for 2 years now.  In the meantime, I am participating in an online clinical trial with the American ALS Therapy Development Institute.  Every month or so they record my voice sample of "I Owe You a Yo Yo Today", and I complete an ALS-FRS-R (Functional Rating Scale).  I received a very nice thank you letter for my participation and thought I would share it with you.
Picture
​Hello Carol,
 
This is a note to say thank you, but I confess that it feels inadequate.
 
At the start of the Precision Medicine Program, we asked you to share voice samples with us. We told you that if we could learn to sensitively detect changes in your voices, we might be able to sensitively measure treatments that were helping those symptoms. This would ultimately help ALS researchers and doctors find treatments that work. We had no idea how we were going to do it, but we knew we’d never figure it out without first collecting voice samples. 
 
For months, maybe years, you’ve called into a phone line hosted by us at ALS TDI to share your voice samples. You may have wondered if anyone was even listening to the recordings. Our clinical and research teams have listened to nearly every single one. 
 
As we’ve listened, we’ve been reminded of one of the key ideas underpinning the Precision Medicine Program: that no two ALS experiences are exactly alike. In listening, we haven’t just heard ALS symptoms in your voices, we’ve heard your diligence, your frustration, your determination, and your humor.
 
In the past year, we partnered with researchers at Google to learn how to use these data. We’ve shared nearly 10,000 recordings with them. The Google team uses automated machine learning algorithms to parse the data embedded in the voice recordings. 
 
It turns out Google has some smart folks! They’ve made real progress in tracking bulbar ALS symptoms. We are so excited about where the collaboration will take us, not only because of their know-how, but because of their team’s compassion. Like us, their team has listened to the voice files personally and were touched and motivated by what they heard from you.
 
You’ve told us, month after month, that you owe us a yoyo. Nope. You don’t owe us anything. We owe you our gratitude and so much more. We owe you progress and results. We’ll get there together. 
 
Thank you.
 
Sincerely,
Fernando G. Vieira, MD
Senior Director of Preclinical Research
Co-Principal Investigator, Precision Medicine Program
ALS Therapy Development Institute
ALS TDI PMP
3 Comments

    Author

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

    Archives

    September 2020
    July 2020
    June 2020
    May 2020
    April 2020
    March 2020
    February 2020
    January 2020
    December 2019
    November 2019
    October 2019
    September 2019
    June 2019
    May 2019
    April 2019
    March 2019
    February 2019
    January 2019
    December 2018
    November 2018
    October 2018
    September 2018
    August 2018
    July 2018
    June 2018
    May 2018
    April 2018
    March 2018
    February 2018
    January 2018
    December 2017
    November 2017
    October 2017
    August 2017
    July 2017
    June 2017
    May 2017
    April 2017
    March 2017
    February 2017
    January 2017
    December 2016
    November 2016
    October 2016
    September 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015
    January 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    April 2014
    March 2014
    February 2014
    January 2014
    December 2013
    November 2013
    October 2013
    September 2013

    RSS Feed

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