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Support Stefano Guidi to deal with MND / ALS

  • Heartfelt thanks and an invitation...

      20 July 2016
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    Stefano and I would like to write a blog to keep those of you who would like to follow our story updated about the progress of his fight with MND. Here's the link:

    https://stefanosmndjourney.wordpress.com/

    First and foremost we are so grateful to the hundreds of our friends and friends’ friends who have donated to the Givealittle page, in order to help us pursue different medical paths for Stefano. Thank you so much, without it we would not have many options available to us. We are also realistic about the possibility that we may not find a treatment for Stefano which will improve his outcome, so some of the funds will help us to fulfill a few of his dreams. We will keep you updated about that also.

    Last week we returned home from a trip to Italy, where Stefano spent some precious weeks with his family and close friends. His brother Alessandro, who is in the medical profession in Florence, scouted out ALS specialist Dr Vincenzo Silani* in Milano, and luckily Stefano was prioritised on the wait list and able to spend two days with him doing extensive testing during our trip. We now await the results from those genetic tests, some due end of July and some due end of August, which will dictate whether or not Silani is able to assist us further.

    We all flew to Wellington directly after landing in NZ from our Italy trip, for Anna’s Orchestra Wellington concert**, and are now back home in Warkworth recovering. Poor Matteo is now happy to be home in his own bed, he has just about spent more of his life traveling than at home!

    Thank you for your support, your concern and your friendship during this ongoing trial.

    Anna, Stefano and Matteo

    * http://www.alsa.org/news/media/press-releases/gene-supports-transport-defects.html?referrer=https://www.google.co.nz/

    ** http://www.stuff.co.nz/dominion-post/culture/82190678/concert-review-orchestra-wellington-capriccio

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  • Treatment Update from Italy

      6 July 2016

    Thank you to those incredibly kind people who have donated to Stefano's cause, here's a second update on our journey to finding treatment:

    Last week Stefano spent two days in Milanese hospital, being tested by Motor Neuron Disease specialist Vincenzo Silani. He completed 8 tests, in order to distinguish more precisely the nature of his disease, most importantly to determine which genes are causing his MND.

    Doctor Silani is working on ground-breaking research which points to the possibility that epigenetics can halt the progress of some cases of familial ALS. In order for Stefano to benefit from this research, he needs to have familial ALS (only 5-10% of cases are) and his ALS needs to be caused by one of three particular genes, all of which Doctor Silani has had some success in repressing in trials.

    If Stefano is lucky and the conditions are right, the aim is that he will be referred to the Sydney Motor Neuron Disease centre, where there will be an infusion of monotype antibodies, the object of which is to destroy the specific gene responsible for his ALS.

    Here is some information on the research:

    : A Hexanucleotide Repeat Expansion in C9ORF72 Is the Cause of Chromosome 9p21-Linked ALS-FTD: Neuron

    http://www.cell.com/neuron/abstract/S0896-6273(11)00797-5

    After that, if successful, there is a second phase option to take part in stem cell therapy, which would be completed at a later date if it becomes an option, due to that therapy being very much in experimental stages and still rather risky.

    (Anna Leese Guidi)

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  • Matteo's christening in Italy

      6 July 2016

    After friends generously gifted Anna and Stefano air miles the couple were able to travel to Florence, Stefano's home town, to spend time with his family and to christen Matteo. I happened to be in Berlin at the time and was able to attend the christening which was a very touching occasion held in a tiny chapel on the Petrolo Estate, where Stefano was formerly the vintner. Anna's musically talented brother Matthew was there and organised a few of us to sing at the start of the christening alongside Anna. The christening was followed by a long outdoor lunch where many of Stefano's friends and family, including his 94 year-old father could meet Matteo and spend time with Anna and Stefano. It was the quintessential Italian experience and it was heart-warming to see Stefano so happy. They return to New Zealand at the end of this week because Anna has work with Orchestra Wellington singing music from Strauss' Capriccio in a concert performance. If you would like to watch Anna perform, the details are here: http://www.orchestrawellington.co.nz/events/capriccio/

    Being in Italy also enabled Stefano to travel to Milan and investigate a particular trial programme. Please see the next update for more information on this.

    Clarissa

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  • Treatment Update

      19 June 2016

    Thank you so much to everyone who has given so generously to support the Guidi family. Anna, Stefano and Matteo are hugely appreciative of your kind support.

    We're pleased that Stefano has found a medical trial in Italy that he would like to be a part of, and he is now on the waiting list. When confirmed, and if Stefano is accepted onto the trial, he will begin stem cell therapy treatment in Milan for 18 months, from spring 2017. Initial results from phase 1 of the trial are extremely encouraging, with no negative outcomes as a result of the treatment.

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    • 01/07/2016 by Diana

      This is a start. Thank you for the update