ALS Awareness Month
Content Courtesy of the Forever Young Podcast with Christiana Egi and Cherrie-Marie Chiu.
We are just gearing up for ALS Awareness Month again. For ALS double play, it brings their most significant event of the year, the intentional walk for ALS. June is ALS Awareness Month in Canada, and we took a moment to chat about ALS and some new findings, and why community is the theme of this year's walk. Cherrie shared more about her family's journey and her only brother who succumbed to the disease. While this has been a challenging journey, Cherrie and her family have been able to impact many lives and work towards a cure for ALS through their charity program - ALS Double Play. Listen to the full podcast below:
ALS stands for Amyotrophic Lateral Sclerosis, and it is a neurodegenerative disease. ALS is caused by changes in the brain, where you lose all of the use of your voluntary muscles. These are muscles that control your ability to walk, talk, hug, and eat. We used to say that people do not see any changes in their cognitive abilities with ALS, but newer findings have shown that most people have seen some decline in their cognitive abilities.
Cherrie's brother was only 31 when he started experiencing changes in his body. After many tests and a recommendation to see a neurologist, he was diagnosed with ALS. It is unfortunately a failed disease to everybody who gets it as research is still being conducted on a cure. Christopher lived 5 years after his diagnosis - many people live 18 months and five years after their diagnosis. It was Christopher's wish that they continued to talk about him and ALS, although he had no idea Cherrie would start a charity organization for ALS. ALS Double Play was started by Cherrie and her mother, in remembrance of her brother, to create awareness and funding for ALS research
Do you remember the ALS Ice Bucket Challenge? Almost 10 years ago, the challenge was an activity involving the pouring of a bucket of ice water over a person's head to promote awareness of the disease.
A lot has changed since the ALS Ice Bucket Challenge and a lot of the money raised went into research. A new drug called Topher was ratified by the US Food and Drug Administration. It has also been made available in Canada for almost a year or more already. This drug specifically targets a gene mutation called SOD1 and is related to familial ALS (the genetic form of ALS). About 5-10% of all ALS cases are genetic and it does not skip a generation. What is amazing about this new drug is that even though it's targeted at a specific kind of ALS, it really teaches us a few different things. It tells us that ALS can be treatable. We have seen life expectancy lengthen by a few months more, which some people may say that's not very much, but when you're given a diagnosis of a deadly disease, a few months can make a difference. The second thing is that this is really promising. This drug is specifically for genetic forms of ALS, we can learn from this drug when we're looking at sporadic ALS as well. And thirdly, this drug was found in collaboration between educational research and industry. This shows us the impact of working together with higher institutions of learning and industry and what can come of the research that is done together.
When people work together, along with science, we are able to create amazing change. While this drug is not a full cure, it is such a promising and rewarding feeling that brings us hope. Please keep working hard to find a cure for these terrible diseases that are going on.
While ALS Double Play focuses on funding ALS research, Cherrie shared the research lab is right beside the lab that focuses on other neuro diseases. The lab is dedicated to all neuro diseases and the findings can affect one another and create change. The fact that scientists work side by side and are able to share their results in real-time is really also very impactful.
ALS Double Play uses its funding to support the Christopher Chiu Fellowships at the University of Toronto. This is Canada’s largest and most internationally published ALS research lab. Its fellowships support postdoctoral researchers for three years at a time, and they are currently funding their third researcher. Dr. Phillip McGoldrick, one of their past researchers, was recently published for a significant finding he made with a protein called C-nine or 72. This protein is also related to familial ALS, which is the genetic form, but again, this particular protein and the links that he has found for a specific type of ALS, does not mean it doesn't impact the overall understanding of the disease. We are very proud of Dr. McGoldrick and the work that he continues to do for ALS. Without the support of our donors, Dr. McGoldrick's work may never have happened.
The hard work that Cherrie and her team have been putting in is yielding some amazing results. We hope one day we will be able to find a full cure for ALS through the funding ALS Double Play and many other charity organizations aim to do.
Finally, Cherrie shared more on the intentional walk for ALS done by ALS Double Play. The walk will be held on Saturday, June 10 and it will be the 6th intentional walk organized by ALS Double Play. Cherrie mentions that when dealing with the loss of a loved one and even thereafter, community helps us continue moving forward. Which is why they decided to theme this year's walk on community. The community helps keep Christopher's memory alive and as well as the many others who have passed from this disease.
Please join us on June 10 and take part in the intentional walk for ALS awareness. Anyone and everyone is able to participate in the walk! Visit the ALS Double play website alsdoubleplay.com for more information regarding the time and location. It can be devastating to see your loved one go through this process. They need continued support in order to fund more research and create positive change around finding a cure. Let's all join hands and be part of that. Please join us on this intentional walk to support Cherrie's family and many other families who are going through this journey.
The Forever Young podcast was created and produced by Christiana Egi and Cherrie Marie Chiu. Produced and engineered by Elisse Hill. The podcast represents our opinions and those of our guests. The content should not be taken as medical advice. It is for informational purposes only. Please consult your healthcare professional for any medical questions. If you like our show, please tell your friends and leave a five-star review on Apple Podcasts. New episodes are available every other Wednesday. Have questions? Email us at ourforeveryoungpodcast@gmail.com.
