As many of you know, I spend part of my time advocating for ALS treatments and research, and trying to raise awareness. I know that some of you probably wonder why, since I have lost so much function any new treatments would most likely come too late for me. Living with this disease is like nothing I could have ever imagined and not in a good way. I have read that in the next 20 years, the prevalence of ALS is on track to increase by 60%. I can’t fathom my kids or anyone else for that matter receiving the death sentence that is ALS. This is what motivates me to fight for the cause… and there is always the hope that a treatment could help to extend my life, even if it’s just by a little. I have come to realize that each and every day is precious.
I am very grateful to be a part of a Canadian advocacy group, ALS Action Canada. A Canadian patient-led initiative to improve access to promising therapies for those living with ALS today. Currently there are 40 families from across Canada, affected by ALS belonging to the group. The goal is to increase that number, so if you are a Canadian living with ALS or their caregiver we would love to have you join us. See the website (link below) or let me know and I can provide you with more information.
For those of you who aren’t directly affected by the disease, but wish to get involved, there are a number of ways to help our cause. I encourage you to please check out the ALS Action website, in particular the Take Action section. There are several quick and easy things you can do that will go a long way in furthering our efforts. Thank you in advance!
https://alsactioncanada.org/
Sign this Petition (e-2971) to Canada’s Minister of Health calling for a pilot program to speed up the approval process for new ALS therapies.
Many of you have signed this petition already through Facebook and I am so grateful, but if you haven’t, now is the perfect time. 🙂
This week the ALS Action Canada group held a Zoom meeting with several MPs from across Canada. I was so encouraged, both by the members of our group who so passionately advocate for the ALS community, and by the elected officials who are choosing to fight alongside us.
I can imagine a world free from ALS, but it will require the collective efforts of many. Please take the time to check out the website and find ways that you can help us end this cruel disease.
Follow us:
Twitter: @ALSAction #ALSAction FB: fb.me/ALSActionCanada IG: instagram.com/ALSAction
Thanks for reading and please let me know of any thoughts or questions you might have.
Until next time,
Leanne xo
I too wonder why the theories are for the increasing rate of ALS & what is the theory about what is causing the disease itself? Is there a known cause?
The article I read was awhile ago by a neurologist. The rise in numbers due to the rise in other neurodegenerative diseases like Alzheimer’s and Parkinson’s. There are many suspected causes which most are environmental… toxins, heavy metals and yeast to name a few.
Signed it tonight! The least I can do.
Thank you Sandra. I really appreciate it.
ALS is a cruel disease.. I was diagnosed of ALS in 2019, I stopped some of my ALS medications due to severe side effects and I started on ALS herbal natural treatments from VineHealth Center (Visit vine health center. com), the treatment has made a very huge difference for me. My symptoms including weakness, difficulty swallowing and slurred speech disappeared after few months on the treatment. I am getting active again since starting this treatment program