Patients like Michael inspire us to continue our mission to make it easy for patients to contribute to research for medical conditions that matter most to them, regardless of their location or ability to travel.
My name is Frances Saldana and I’m a Huntington’s disease patient advocate. I’m also the mother of three children who all inherited Huntington’s disease from their father. Their father passed away 24 years ago. My youngest daughter passed away almost four years ago and I have two remaining children with Huntington’s disease. I was informed that it’s a genetic disease for which there was no cure or treatment. At that time that kind of news was just too devastating to absorb. I really couldn’t do much, didn’t have the strength to be a fighter. Very soon after their father passed away my youngest daughter started showing symptoms. She was only 13. My heart just sank when I saw the symptoms. At that time, that’s when I really became a fighter for the cause. I knew that I just had no more time to waste.
I received an email about the work that was being done by Sanguine and I immediately called them and said, “Yes, my son would like to be a donor.” And so they quickly made an appointment and came to see Michael. The representative was wonderful. My son was so grateful that somebody was doing something to find the cure. That’s all he knows, that they’re trying to find the cure for this fatal disease. I think this is going to motivate other companies to hurry up. Imagine what it’s going to be when the first company actually finds a cure. I think there’s a race for the cure now.
I thought I was going to be a choreographer, a writer, choreographer, and my life just changed. I never envisioned myself as a caregiver or a patient advocate, but now there’s nothing else that I would rather do. I can accept the fact that my children will not have a full life. All I can hope for is that the work we’re doing, the donations that my children are making, that somehow future generations will never have to know what Huntington’s diseases is, they’ll never have to suffer it. They’ll never have to suffer.