Thank you Ruhie for raising awareness about Motor Neurone Disease (MND) through personal experiences, especially the loss of a loved one, is both courageous and deeply impactful. Turning the pain of loss into a mission to educate and inspire others is a beautiful way to honor your Dad’s memory. By sharing his story, you are not only keeping his legacy alive but also bringing much-needed attention to the urgent need for research, support, and, ultimately, a cure for MND. Your efforts will undoubtedly make a difference in the lives of many facing this devastating disease.
Sending love and strength your way—your Dad would be so proud of the way you're carrying his light forward. He was a great inspiring soul and dear friend to many people within community and loved ones. Thanks again for keeping his legacy alive. Mahesh Uncle and Ila Aunty
Thank you Mahesh uncle and Ila aunty for this positive feedback! I really appreciate you taking the time and care to read and offer your thoughts. You have seen the effects of this disease firsthand and know all too well the harrowing effects it has on those it affects. Definitely hoping that more awareness leads to greater funding that is desperately needed for research to one day find a cure 🙏🏼✨
Thank you for your very informative article & a heartbreaking one too. I first encountered this cruel disease when a young dad asked to see me. I used to be a primary school principal. He told me his wife & mother of three young children aged 4, 6 and 8 had been diagnosed with motor neurone disease. This beautiful woman died only 14 months later. It was so tragic to watch how she lost her abilities in speech and movement. We desperately need more research to bring forward a cure. My deepest sympathy to you on your father’s death. Helen OToole
Thank you so much Helen! For taking the time to read and for sharing this moving personal connection you have with MND. My heart goes out to that young family and all affected by this devastating, senseless disease. Hopefully greater awareness can bring more funding for the life-saving research that’s urgently needed to find a cure. Thank you! 🙏🏼✨
It really is, isn’t it? It still blows my mind that he lived like that day in and day out, yet he hardly complained. He suffered a lot, which is why I want to advocate for those who are now facing the same harrowing struggle. Thank you Tiffany 🙏🏼🫶
Ruthie, are you aware of any research that South Asians are disproportionately affected? I have search and haven’t found anything. The “genetic type” that they’ve identified seems to affect people of North/Western euro descent. But just from our experience in support groups, South Asians have fairly high rates of als/mnd. It’s so frustrating how little is known about ALS/MND, and how little funding goes to research.
Hi Celia, thanks for sharing! Im not aware that ALS/MND is more common in certain ethnic groups. It occurs globally at approximately the same rate from what I understand, but there are pockets in the population where it’s more common — athletes interestingly, specific geographical hotspots (like there’s a region in Australia where the incidence of the disease is disproportionately higher), and it’s slightly more common in men aged 40-70. But you’re right, despite decades of research there’s still so much we don’t know about it! That’s why funding for more research is so crucial.
Thank you for raising awareness for ALS, Ruhie. One of my all-time heroes was Pete Frates, who started the Ice Bucket Challenge. He attended the college I attended for grad school.
I was proud to work at an organization that funded ALS research here in the U.S., but sadly it was just a drop in the bucket. Hopefully there will be a breakthrough soon.
Oh wow, what a small world! The Ice Bucket Challenge was instrumental, but as you said it's still nowhere near enough. Only through ongoing advocacy, awareness and funding can we hope to one day see a breakthrough. Thanks for sharing your thoughts here, Chris!
Thank you Ruhie for raising awareness about Motor Neurone Disease (MND) through personal experiences, especially the loss of a loved one, is both courageous and deeply impactful. Turning the pain of loss into a mission to educate and inspire others is a beautiful way to honor your Dad’s memory. By sharing his story, you are not only keeping his legacy alive but also bringing much-needed attention to the urgent need for research, support, and, ultimately, a cure for MND. Your efforts will undoubtedly make a difference in the lives of many facing this devastating disease.
Sending love and strength your way—your Dad would be so proud of the way you're carrying his light forward. He was a great inspiring soul and dear friend to many people within community and loved ones. Thanks again for keeping his legacy alive. Mahesh Uncle and Ila Aunty
Thank you Mahesh uncle and Ila aunty for this positive feedback! I really appreciate you taking the time and care to read and offer your thoughts. You have seen the effects of this disease firsthand and know all too well the harrowing effects it has on those it affects. Definitely hoping that more awareness leads to greater funding that is desperately needed for research to one day find a cure 🙏🏼✨
Thank you for your very informative article & a heartbreaking one too. I first encountered this cruel disease when a young dad asked to see me. I used to be a primary school principal. He told me his wife & mother of three young children aged 4, 6 and 8 had been diagnosed with motor neurone disease. This beautiful woman died only 14 months later. It was so tragic to watch how she lost her abilities in speech and movement. We desperately need more research to bring forward a cure. My deepest sympathy to you on your father’s death. Helen OToole
Thank you so much Helen! For taking the time to read and for sharing this moving personal connection you have with MND. My heart goes out to that young family and all affected by this devastating, senseless disease. Hopefully greater awareness can bring more funding for the life-saving research that’s urgently needed to find a cure. Thank you! 🙏🏼✨
That 2-minute exercise was really visceral and eye-opening, Ruhie. Thank you for sharing this.
It really is, isn’t it? It still blows my mind that he lived like that day in and day out, yet he hardly complained. He suffered a lot, which is why I want to advocate for those who are now facing the same harrowing struggle. Thank you Tiffany 🙏🏼🫶
Ruthie, are you aware of any research that South Asians are disproportionately affected? I have search and haven’t found anything. The “genetic type” that they’ve identified seems to affect people of North/Western euro descent. But just from our experience in support groups, South Asians have fairly high rates of als/mnd. It’s so frustrating how little is known about ALS/MND, and how little funding goes to research.
Hi Celia, thanks for sharing! Im not aware that ALS/MND is more common in certain ethnic groups. It occurs globally at approximately the same rate from what I understand, but there are pockets in the population where it’s more common — athletes interestingly, specific geographical hotspots (like there’s a region in Australia where the incidence of the disease is disproportionately higher), and it’s slightly more common in men aged 40-70. But you’re right, despite decades of research there’s still so much we don’t know about it! That’s why funding for more research is so crucial.
My husband was Georgian 🇬🇪 and the incidence is much lower there. But that might be about issues getting properly diagnosed, who knows.
That’s a good point and could definitely play a part. Delays in diagnosis are so common with ALS because there’s no single test that can diagnose it.
Thank you for raising awareness for ALS, Ruhie. One of my all-time heroes was Pete Frates, who started the Ice Bucket Challenge. He attended the college I attended for grad school.
I was proud to work at an organization that funded ALS research here in the U.S., but sadly it was just a drop in the bucket. Hopefully there will be a breakthrough soon.
Oh wow, what a small world! The Ice Bucket Challenge was instrumental, but as you said it's still nowhere near enough. Only through ongoing advocacy, awareness and funding can we hope to one day see a breakthrough. Thanks for sharing your thoughts here, Chris!
A real beast of a disease!!
As you mentioned it needs a lot more research into it if a cure is to be found.
Very informative letter Ruhie!
Thanks Mum! There's a lot of work still to do, which is why it's so important to keep fighting and keep up these vital conversations.