Maria Tassano Scholarship: Telemedicine and Huntington's Disease
The Maria Tassano Scholarship: Telemedicine and Huntington's Disease was created from Osvaldo Tassano's desire - and donation - to remember his aunt, Maria, affected by Huntington's disease, whom he took care of for many years. The decision to link it to research on telemedicine is due to the consciousness that the loneliest people - as Maria was, with an old husband and without children - more than others, need to feel the support of those who can help them and take care of them, also when they are unable to leave their home.
"My dad's older sister, Maria, my aunt, was also affected by the disease, and her first noticeable symptoms began to appear around her 50s. My aunt lived in Como together with her husband, Uncle Lino for us nephews, and had no children. During my university years, I used to visit them on weekends, and I always felt welcomed with warmth (…) I had the opportunity to experience firsthand, although partially, the gradual deterioration of the living conditions of my aunt, which also reverberated on my uncle, who tried until the last day of his life to assist her as best he could and knew, with all the means at his disposal.
Since 2015, returning from a period of work around Italy and Europe, I moved to Como with my family and became for my aunt and uncle practically a point of reference (I would say more or less as a child should be for his elderly parents): my aunt was now bedridden for years (two caregivers alternated to take care of her) and no longer had the ability to speak. My uncle, older than her, was beginning to feel the weight of age. The follow-up visits at the "Carlo Besta" Institute in Milan had become a painful experience for her, since it was necessary to carry her on a stretcher in an ambulance. For this reason, in agreement with the specialist who was taking care of her and considering the final stage of the disease, we decided to suspend the specialized follow-up visits. I think that, unfortunately for my aunt, having had to give up the possibility of being visited by experts in the disease may have contributed to the worsening of her living conditions (an example on all: her general doctor treated her "cough" with a cough syrup, instead of thinking it could be caused by the food going into the lungs, because of my aunt's difficulty in swallowing!)
In that context I realized how important it was for a person suffering from this condition, especially if he/she lives far from the specialized centers, to have the possibility to be visited at home by an expert in the disease (in Como there are no neurologists specialized in Huntington's disease), as well as having a support network around her that can take care of all aspects of her life, both medical and non-medical (e.g. management of caregivers, bureaucracy, money, and so on) and I thought about how common that same condition could be to other people affected by this disease (…)
(…) After the death of my aunt and uncle, I managed on behalf of my father, the only heir, all the obligations related to the inheritance and it was then that I proposed to the family the possibility of using a part of that money to leave a "tangible" memory of my aunt, that would be connected to the Huntington's world.
The initiative of the scholarship was agreed with LIRH and I would like to take this opportunity to thank Barbara for her constant kindness in dedicating her time to me and for making me part of the process of definition of this initiative, in which I strongly believe.
Finally, I would like to thank in advance the future scholarship awardee "Maria Tassano": I'm sure you will do a great job and you will give an important contribution to the promotion of telemedicine in Huntington's disease. I would only ask for your maximum commitment and dedication in carrying out this task, also keeping in mind how many difficulties could be smoothed for patients (and their caregivers) through this medium. We could say, paraphrasing the famous proverb,"If Mohammed will not go to the mountain, the mountain must come to Mohammed". Sincere good luck!
Read Osvaldo's story and find out more here