It has been a while since we have last posted to the blog, but we have some exciting updates to share. Gabby spent a week here for her spring break and they took a trip to Niagara for my grandparents’ 51st anniversary. It sounds like they had a great time getting out of the house and viewing the falls and hanging out with the family. I arrived here a week ago but have to leave tomorrow but we’ve spent our time hanging out around the house, checking out new physical therapy locations, and an overnight trip to Connecticut to see some friends and coworkers. Spring seems to finally be on its way and we can see grass for the first time since the start of the winter!
Now onto updates. As many of you know, Veteran’s Affairs gave the family a grant to build an addition to the house. The addition is a first floor master bedroom that has doors wide enough for a wheelchair and allows for my mom and dad to sleep in the same room again. It sounds simple, but something as small as being able to sleep in the same room has the potential to radically change the quality of life. Although the brutal winter delayed construction, we’re happy to report that the foundation has been laid and most of the support is already up. The contractor estimates that construction should be done sometime in May, excellent news.
The big recent announcement came from Neuralstem, the company that developed a procedure to plant stem cells directly into ALS patients’ spinal cords to hopefully reverse the damage to the motor neurons. Last April, my dad was selected as a recipient of 8 million stem cells in Neuralstem’s Phase II trial. There were a few complications with the surgery and we had to endure several months of tough therapy to get back on track. Nueralstem published their study on March 12th and were happy to announce that the study was deemed successful! 47% of the 15 recipients showed a response to the treatment.
We received a call two weeks ago from the study doctors and they said that my dad was a responder! It seems that the stem cells have worked in slowing (hopefully stopping or reversing) his disease progression. His breathing tests show that he is in the 93rd percentile for his age group (that means his lung functionality is better than 93% of males of the similar age). Suffocation is one of the leading causes of death for ALS patients so this is extremely good news. My dad would also like to report that he feels better now than any time since the surgery. He says, “Although I was a different person before the surgery, I feel really good mentally. The pain is going away and I’ve begun to drop medications.” He credits his successes to more than just the stem cells. “A big part of it is due to Ann Fleet and Bonnie Soper coming every week working on my strength and range of motion.” Ann and Bonnie are two of his trainers/therapists.
The study is a little dense with terminology so I’m going to do my best to give a summary. The study measured the ALSFRS score, a set of ten questions that provides a “physician-generated estimate of the patient’s degree of functional impairment” which is used to assess progression of the disease, as well as grip strength of each patient nine months after the cells’ implant. Seven of the fifteen patients showed either close-to-zero decline or an increase of ALSFRS score as well as a close-to-zero decline or positive strengthening of grip strength! While the study didn’t contain a control group, the average responder’s ALSFRS score was 93% of their baseline, while the non-responders declined to 35%. That is a huge difference and is great news for us. The study announcement can be found here.
While eight patients did not respond to the treatment, Neuralstem hypothesizes they have a way to effectively predict whether patients will respond to the treatment. The study is great news to the ALS community. If these results can be replicated in their next trial, it will be the best response seen in any previous ALS trial. Neuralstem says they anticipate continuing with a trial later this year.
With the success of the Ice Bucket Challenge and daily advances in ALS research, we are slowly getting closer to a cure.