What is HD? PSA Guest Post
Tam Maiuri, 37
May 23, 2016
My grandfather had Huntington disease (HD), so we have known about the disease in our family for a long time. And we have been involved with the Huntington Society of Canada (HSC) through fundraisers and other activities since I was a kid. Now, my mom is starting to show symptoms.
Huntington disease is my job. I work in an HD research lab, and my greatest hope is we will find a treatment soon. There are a lot of people working on this, and they are working really hard. Research is a very slow process — it has been 20 years since they identified the gene — but things are finally coming to light.
Now is the most exciting time in the history of HD research because we have got drugs going into the clinical trials testing phase. What we really need now is for people to participate in clinical trials because we have lot of drugs that need to be tested.
HD is a major focus in my life, it’s in my family and I work on trying to find a solution for HD every day. In my spare time, I play in the band Eli and the Strawman and we are working with the Huntington Society of Canada to raise awareness for HD. We recently completed our first Canadian tour and have incorporated information about HD in our marketing materials. Our lead singer wrote a song called No One, which is quite fitting to the cause because the lyrics talk about coming out of the fog. I think that’s what’s happening — not only in HD research, but also with all the resources and support services that are now available to families.
We have spent a lot of time and a lot of hard work trying to find a solution to HD, and its coming. I really believe it is coming.
To see Tam’s video testimonial, click here.
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Huntington disease (HD) is an inherited neurological disorder that is currently fatal and incurable. It creates emotional, cognitive and physical symptoms. To learn more about HD and how the Huntington Society of Canada supports families affected by the disease, visit www.huntingtonsociety.ca/psa-campaign.