In Moscow completed IV all-Russian patient conference on amyotrophic lateral sclerosis (als). It was organized by the charity Fund “living now”, which deals with how patients with als and other neuromuscular diseases. The event was held with the support of Philips and the medical Foundation partners: Scientific centre of neurology, Central clinical hospital of SVT. Alexis Metropolitan of Moscow and clinical hospital named after V. M. Buyanova.
Of cases of amyotrophic lateral sclerosis the patient gradually loses the ability to move, speak, breathe, or eat. This is due to lesions of the motor neurons. For such patients, it is important care – without otkalyvalis, special beds, wheelchairs and more families of patients can not do.
Now amyotrophic lateral sclerosis is an incurable disease, and the patient is symptomatic support. The emergence of effective drugs that slow the progression of the disease, is undoubtedly important for patients.
Perhaps, the main event is the speech of the special guest of the conference. Spanish doctor Jesus Mora told about clinical trials “Masitinib” – a new drug for patients with als.
The study is being conducted in several countries, and the results of phase II clinical trials are already known. It has been shown that taking the drug in combination with riluzole already registered drug that actually slows the progression of the disease better than riluzole.
Dr. Mora said that testing of such drugs is not easy, and even more difficult to assess the effectiveness of the drug or the lack of it. The thing is that the BASS is not there are biological markers like, for example, sugar level in diabetes. Its effectiveness can only be assessed carefully examining patients for a long time.
The next phase of clinical trials will begin in the summer of 2018. It is expected that the study will be approved by the domestic Ministry of health and then to participate in it can and patients from Russia. Those wishing to participate in the trials can fill out the preliminary application on the Foundation’s website, “Live now.”
Jesus Mora noted the need to disseminate information about lateral amyotrophic sclerosis. He forgot to mention Stephen Hawking, perhaps the most famous patient with als. Mora noted that Hawking was the face of BASS, and was actively engaged in the dissemination of information about the disease.
He called on celebrities suffering from ALS, do not hide your disease, rather talk openly about it – this would allow people to learn more about the disease and to draw public attention to the problems of patients with als and researchers involved in the study of disease.