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60 Seconds with…

La BCM è una malattia molto rara e per questo molti pazienti hanno passato gran parte della loro vita senza avere una diagnosi certa, spesso soli, senza contatti con persone nella loro stessa condizione.

Grazie all’avvento dei test genetici, dei social media e di internet e grazie al supporto della BCMFF, siamo ora in grado di far entrare in contatto tra loro pazienti di tutte le età, che possono ispirararsi ai successi ed imparare dalle esperienze degli altri.

Trudi Dawson, madre di un bambino affetto da BCM e residente nel Regno Unito, presenta la rubrica “60 Secondi con…” che ha l’obiettivo di connettere le famiglie e condividere le esperienze di coloro che convivono con la BCM.

Mentre attendiamo che una terapia sia disponibile, possiamo lavorare per creare una rete di supporto per noi e le nostre famiglie.

Mike Fry

I am a stay at home dad to 5 wonderful children. Before that I was an attorney for the State of California in the …

Bradley Harrison

I love to travel, I have been to 17 countries, I like to snowboard in the winter, watch movies and play …

Nacer Boussahoul

I love hiking, being lost in wild spaces. I really enjoy martial arts practice and recently discovered a passion…

Robert Finch

I am retired from paid employment but I gained a BSc. in Mechanical Engineering (without seeing the…

Tom Rogers

I currently work in the Gym Group, Crawley as the Assistant General Manager. I aspire to be a…

Paul Rowland

For more than thirty years, I was the psychologist for North Carolina’s Division of Services for the…

Kyle Bieze

I was president of my highschool’s Latin Club, was elected into my university’s Student Government..

Benedikt Roemer

I am currently a research associate at a university in Germany and pursuing a PhD project in the…

Hawk Masters

I have worked so many different things in my life. Professional education as a baker..

Jameson Cavitt

When I am grown up I would like to study animals and help them to survive if they are hurt…

David T. Dilling

I am retired as the owner of an HVAC business which I sold in 2015. I like to read, go to movies and work in…

Oscar Wohlfahrt

I am currently studying for a bachelor’s degree in General Engineering. I am quite…

Dean Monthei

I am retired now but worked as a materials engineer specializing in electronics packaging…

Oscar Dawson

My great-great Grandfather was described as ‘not being able to see colour and not being…

George Donaldson

I grew up at a time when there was not much information about BCM, so I would suggest educating…

Virgil Wade

I was a Machinist. I would have liked to have been a Cowboy and Rancher all my life…

Jason Faulkner

I don’t like doing things that remind me that I can’t see as well as others. Not much for…

Robert Hicks

After a lifetime with BCM, here are a number of tips from various times of life: As a young person…