Your 8 years old son has a twitched in his hand. You make an appointment at the Doctor. An hour later, you leave the place devastated by the news that your son has a diffuse midline glioma of the thalamus: an inoperable, aggressive, and incurable brain tumor.
This is what Anne and Fabrice, parents of 8 years old Anatole faced in May 2018.
They are knocked out by the news. The standard protocols are executed (Proton therapy, chemotherapy). Nonetheless; their son Anatole dies slowly.
They decide to fight. Which means to inform themselves about other options. This leads them to Washington Children's Hospital to start a new medication; for compassionate use. Understand, the very last chance.
Since April 2019, Anatole has benefitted from the ONC201 treatment. Only possible thanks to massive fundraising (http://tousavecanatole.com/faire-un-don/).
It is working. The tumor is reduced by 60%. For this young boy, it means going from paralyzed to regaining mobility. From being incapacitated by side effects of chemotherapy to being able to play. From being isolated to going back to school and having friends.
For his family, it means having hopes again.
Fabrice contacted me 3 weeks ago.
“Cécile, I need your help. I have been invited to the Senate in Paris on February 8th for a conference on innovative treatments for pediatric cancers, to present the case of Anatole. The symposium will bring together around 200 members of parliament, researchers, heads of associations, etc…”
When we started to work together, I asked Fabrice what was the impact he wanted to trigger with his speech.
His objective number one was to contribute to accelerating the arrival of the ONC201 treatment in Europe.
He said:
“Many parents put all their energy into dealing with the administrative, financial and legislative hurdles that prevent our children from having access to these innovative treatments, in addition to devoting themselves to their sick child. Often the disease progresses so quickly that all efforts are for nothing. The feeling of injustice is unbearable. Because their little boys and girls are dying one after the other.”
In France only, each year, there are around 2’500 children diagnosed with cancer, who could benefit from innovative treatments. 2’500 Families who could hope again.
I just had a telephone conversation with Fabrice. He sounded happy about what happened on Saturday 7th February at the Senate. It went very well.
Was he sleepless the nights before?
Certainly!
Was he anxious prior to going on stage in front of an audience of 200+ composed of members of parliament, researchers, heads of associations, and directors of oncology departments?
Absolutely!
Was he dreading to speak about something deeply personal, emotional and challenging?
Totally!
Despite the discomfort of the adrenaline and the fear, Fabrice did it.
And he did it very well. Why? Because it matters.
When your voice can help the lives of 2’500 children, when it matters, when your words can help a cause, you simply do it.
Well done my friend!
If you want to become a competent and confident speaker, manage your Fear of Public Speaking and work on your Communication Skills: Check the list of the Group Training Events (Next Sat. 14 March 2020), Individual & Corporate Programmes.