Running for rare in Boston

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One of the industry's own will depart for the US tomorrow to run in the Boston Marathon to raise awareness and funds for rare disease.

Peter Bayliss, communications business partner at Sanofi, will run having lived the issue very personally in recent years following the passing of his wife Lisa.

Lisa was just 47 when she passed away from the inherited version of Creutzfeldt-Jakob disease (CJD), a rare, untreatable and almost forgotten disease.

"It is rare. People might know about CJD as 'mad-cow disease' but Lisa had the incredibly rare genetic version and that has been largely forgotten as a disease."

Lisa and Peter were aware she faced the inevitability of CJD. Her father passed away from the disease, at age 63, and testing in 2005 after his death confirmed Lisa and one of her two sisters carried the lethal gene.

However, the onset in late 2014 came sooner than expected and she passed away within weeks of the confirmed diagnosis. 

Peter will mark the three-year anniversary of her passing by running the Boston Marathon as part of his personal campaign to help others going through similar experiences. He was invited by the US-based National Organization for Rare Disorders to represent them and has welcomed the strong backing of Sanofi. 

Peter says their three sons each face the prospect they carry the gene. "They are very tight and still living with the emotion of losing their mother with almost no time to say goodbye. It was devastating for all of us. People cannot be tested until they turn 18 and I think they will go through that process together, like Lisa and her sisters."

There is no treatment for CJD and Peter says its rarity is not helped by the fact so little is known about the disease. "Finding markers that indicate when the disease is taking hold would help give families just a few extra weeks with loved ones, and I can tell you those weeks make all the difference, especially for children."

He says his own personal learnings from the experience have highlighted the importance of talking and sharing time, speaking to others who have lived the experience, to understand what to expect and how it could help your own journey, and doing everything possible to raise awareness.

More information on how you can support Peter is available at his fundraising website