I have left the darkness surrounding Huntington’s disease.
At 5 p.m. on February 7, 2011, I gave the keynote address at the Sixth Annual HD Therapeutics Conference, sponsored by the CHDI Foundation, Inc., informally known as the “cure Huntington’s disease initiative.”
About 250 prominent scientists, physicians, drug company representatives, and others listened to my speech, which was titled “Blog Entry 85 … Unmasking the World of Gene Veritas: An Activist Copes with the Threat of Huntington’s Disease.”
I was introduced by Robi Blumenstein, the president of CHDI Management, Inc., the organization that implements the foundation’s goal of finding treatments and a cure for HD. The meeting took place at the Parker Palm Springs hotel in Palm Springs, CA, from February 7-10.
Vanquishing disease
I revealed my real name. I described my family’s struggles with HD, my personal challenge to live a healthy, balanced life under severe pressure, and how, while maintaining a career and family, I have dedicated my life to ending the threat of this cruel disease.
And I saluted the scientists in the room and around the world working hard to find treatments and a cure. I urged them to redouble their efforts.
“You and I – the HD-positive man and the community of HD researchers – you and I stand on the cutting edge of science and of history,” I declared. “Because, in conquering HD, you are going to hold out the hope of a world in which disease is vanquished.”
At the end of this article I have posted a home video of my speech. (A professionally edited version of the video will become available in the near future.)
A liberating feeling
I have stepped decisively out of the HD closet.
But “Gene Veritas” will still live on in cyberspace. That powerful name – the “truth in the genes” – has become my trademark. Through its anonymity and universality, it symbolizes the common struggles of families threatened by HD and numerous other neurological and genetic diseases.
In my speech, I spoke of the need for HD activists to liberate the entire community from the darkness and stigma surrounding HD. Before my speech, I wrote that I felt like an “alien” because of that stigma (click here to read more).
Now, however, I feel liberated.
Not time to rest yet
To say the least, it was a momentous week for me.
For now, I just wanted to share with you the speech.
Soon I will post another article exploring the impact of the speech and its implications for my future. I will post other articles and videos about the CHDI meeting, the “Super Bowl” of Huntington’s disease research.
The speech was a milestone. But the task of treating and curing HD still remains.
Scientists have made great progress, but we cannot rest until we reach our goal. For so many of us, time is short.
Unmasking Gene Veritas: a Huntington's disease activist goes public from Gene Veritas on Vimeo.
