Running for ALS research
Hi, Pirko Hamer here! I started running marathons in 2014. My first one was the NY marathon in November 2014 for a charity called “debra”.
In order to sign up for a marathon you have to be either fast enough (not me), lucky enough to win the entry lottery (not me either), sign up through a travel agent (and have them make money) or do it through a charity.
I chose charity. You can do good by doing something you enjoy.
In September 2015 I ran the Berlin marathon for “Team for Kids”.
Every time my goal was to finish in under 5hrs but I never made it! I still have a lot of excuses why I wasn’t able to: it was too windy, it was too cold, waiting time was too long, I didn’t bring enough food, didn’t bring the right food, etc.
So it looks like I need to run another one!
I decided to do the Tokyo Marathon on February 26th, 2017. That’s another one of the big ones. There are 6 of them – Boston, Berlin, Chicago, London, New York and Tokyo.
This time I signed up through a travel agency, not because I wanted them to make money but because the cause I wanted to run for had no charity to enter this marathon.
So the idea is that I run the 42.195km and you hopefully help me raise money for my friend Julius Neumann and his center for ALS research. I have worked with Julius between 1992 and 1998. He was a lot of fun to work with and we soon became friends.
Unfortunately, Julius was diagnosed with ALS in 2007. He has a wife and two beautiful daughters, aged 8 and 10.
He now lives in Milan, Italy where he is cared for by Centro Clinico NEMO. NEMO is a center of excellence for patient care and ALS research. Watch the video that Julius prepared on a typical day for an ALS patient on this page.
Amyotrophic Lateral Sclerosis or ALS, is a serious disease of the nervous system that causes progressive degeneration of the upper and lower motoneurons. Patients with ALS exhibit progressive muscular weakness, difficulty speaking, difficulty swallowing and respiratory problems. Average life expectancy from onset of the first symptoms is 3 to 5 years.
There is no cure and no therapy that can stop degeneration of the motoneurons or even slow down substantially progression of the disease. Treatments available focus on improving quality of life.
A major issue in ALS is the lack of easily reproducible biomarkers that can predict the evolution of the disease and its prognosis. Why is this important? A correct prognosis helps the patient's care team at the clinic develop a personalized and more effective treatment plan. The use of these biomarkers can also be very useful in segmenting the patient population for clinical trials.
Over the years Centro Clinico NEMO has built a database containing patient demographic, clinical and biochemical data. By analyzing the data NEMO will be able to identify the factors that influence prognosis already from the first patient evaluation. By understanding the prognosis in advance, it will be possible to optimize interventions such as PEG (for feeding) and NIV (for breathing). Several studies have shown that the correct and timely usage of PEG and NIV contribute to a better quality of life and extended life expectancy in ALS patients. NEMO will also be able to better segment patient population and provide optimal care to its patients using the predictive models identified.
To analyze this complex data and come up with the models, NEMO hired dr. Andrea Lizio biostatistician. The funds collected will go towards renewing dr. Lizio's research contract.
A big thank you to everyone supporting us!
Now, I just gotta start my training…