I hear this constantly from people, baffled that in the age of supercomputers and artificial intelligence we haven’t been able to stop this beast of a disease in it’s tracks. Sadly, ALS research is extremely underfunded by the government, or in Canada zero funded, and awareness is very meagre. When I was first told that I had ALS, I was shocked to discover that I had no treatment options to choose from. I was basically told there was nothing I could do, the average life expectancy was between two to five years, so go enjoy the time I had left. Seriously??! It’s frustrating to think that if ALS was contagious, unlimited resources would undoubtedly be given to research, and it is highly unlikely that it would still be a terminal illness. What’s even more frustrating is the fact that there are treatments out there right now that have shown tremendous promise, but those with ALS aren’t able to access them.
CuATSM is a small artificial molecule that is able to deliver copper to cells containing damaged mitochondria. The mitochondria in ALS is damaged. Results have shown significant slowing down of progression and an increase in respiratory function.
Dr. Appel’s Tregs therapy involves administering regulatory T cells (Tregs) to ALS patients. These cells help to protect the body from harmful inflammation that accelerates the progression of ALS. Patients who received high doses of these immune cells dramatically slowed progression by as much as 70%.
Brainstorm’s NurOwn stem cell therapy has shown probably the greatest promise. Not only have some participants stopped progression, some have reversed the effects of the disease. In particular, one man who had been wheelchair bound for two years can now walk using a walker and can pull himself up from sitting. Another participant who was having difficulty walking can now run.
So while these treatments may not be the cure for ALS, they are very valuable, and who knows how powerful they could be if used in conjunction! Why aren’t ALS patients able to access these therapies? Each of these treatments have been in clinical trials, NurOwn going into phase 3. The process is extremely slow and researchers need money to facilitate these trials. The FDA could fast track the process and get the treatments approved, since they have shown to be safe and effective, yet the powers that be refuse. I have heard they aren’t satisfied that there will be no long term side effects. Really?! They do realize that with such a horrendous illness and life expectancy, most people living with ALS would gladly accept the risks in exchange for some hope. Sadly, I think it all has to do with money and bureaucratic red tape.
One organization that should be advocating for people living with ALS is the National ALS Association, headquartered in Washington, D.C., sadly they aren’t. The organization has become like any big business and run accordingly; complete with inflated executive salaries and VIP travel. People worldwide donated to the Ice Bucket Challenge with the sincere hopes of finding a cure, but frustratingly most of that money, over 90 million, is still sitting in the bank. The ALSA refuse to help fund these three promising therapies so the trials can be completed, or advocate on our behalf to the FDA. To be clear, I am not talking about ALS Canada which has been trying to spread awareness and gain access to the three treatments mentioned above, or the local chapters that work hard to educate the public and give support to those affected by ALS.
I refuse to sit idly by when there are things I can do to help with this fight, when every 90 minutes means that another person has been diagnosed with this horrific disease or has died from it. I know many of you will ask what you can do to help. Please consider sharing this post, signing a petition to get the FDA to change the guidelines for ALS drug trials and/or joining the Facebook group No More Excuses! FDA and ALSA Protest. If you cannot find, let me know and I’ll send you an invite. Petition link below.
****Petition completed and link removed. Thank you for signing!!****
Thanks again for reading and for your support! 🙂
Petition signed & shared, thank you for the insight Leanne, I appreciate your efforts to shine a brighter light on the lack of research funding, I had no idea ALS received $0 research funding dollars in Canada. Discouraging the amount of hoops to jump through to bring treatments to the people whose lives/quality of life depend on them. I agree, hope with side effects is a better alternative to status quo and praying for a miracle.
I just saw this, tried to sign the petition but it said ‘this typeform is now closed.’
Maybe you have another link.
I lost the link to your blog and found it today. Leanne, I hope that you continue to enjoy life. Your tribute to your daughter is inspiring. Please give my best regards to your Mom. I continue to pray for you. God bless you & your family.