My Daughter Has ALS
A Father’s Journey
Peter M. Sharman
Ottawa, Ontario Canada
Table of Contents
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
11) What Can I Do for Her Now?
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.
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/
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 firstname.lastname@example.org 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/
1701 Woodroffe Avenue
Ottawa, ON K2G 1W2
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.
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.
Fernando G. Vieira, MD
Senior Director of Preclinical Research
Co-Principal Investigator, Precision Medicine Program
ALS Therapy Development Institute
Carol Jean Skinner (née Sharman)