Imagine a disease like Alzheimer’s, but in children.
Sanfilippo Syndrome, also known as Mucopolysaccharidosis type III (MPS III), is a rare neurodegenerative genetic disease. A child with Sanfilippo lacks a necessary lysosomal enzyme in their body which ordinarily breaks down heparan sulfate, a molecule within the cells that helps build various tissues. The accumulation of heparan sulfate over time causes permanent cellular damage. Affected children go through stages as the disease progresses. Developmental delays are typically noticed first. This is followed by extreme hyperactivity, aggression, mental decline, dementia, loss of language skills, loss of some or all hearing and vision, insomnia, seizures, difficulty swallowing, and the inability to walk. Most children pass away in their teens. Currently, there is no FDA-approved treatment or cure for Sanfilippo, which is fatal.
We are the Sink family (parents John and Kathy, Declan, and Zane) and reside in Dallas Texas. When Declan was 4 years old, a single phone call from a doctor changed our lives forever. Terminal. No cure. The devastation and grief engulfed us. A few months after his diagnosis, we found the Cure Sanfilippo Foundation and other families with children living with Sanfilippo. We found a community, support, and a mission.
A Case Study in Peak Performance
by Daniel Unsdorfer
Tom Courtney in the Men's 800m at the 1956 Melbourne Olympics
Many of us train for races and for sports events. The time and effort spent to prepare is substantial, and on race or game day, we want to perform to the best of our ability. But how do we put that into practice? How can we find that next level and (safely) do our best?
There are many places to draw inspiration, but one in particular that has inspired me is the story of Tom Courtney in the Men's 800m run at the 1956 Olympics in Melbourne. You can view a terrific narration of the race with quotes from Courtney himself on YouTube at this link: https://www.youtube.com/watch?v=oNNzW_mBpXc
The result did not come easy. Before the race, Courtney got extremely nervous, so much so that he could barely stand. He said, "it got a little humorous as I thought about it, and I think that humor relieved me." It is common for many people to get nervous before a big event. For Courtney, laughing about the situation put it in perspective and helped him calm down.
How to get started running again
after a traumatic brain injury or
I love to run and this love goes back to my childhood days, running with dad at the Dhahran Hills Track, the Elementary school I attended. Dad always lovingly encouraged me on these basic runs to keep going. Today, it echoes loudly in my mind. Today, a nudge of inspiration covers me with his words, when everyday life events are not going too smoothly or how I would personally like them to go.
In 2002, while on my last training run for the Marine Corps Marathon with my husband, Raul, I was struck by a car and nearly lost my life. As a result, I sustained a traumatic brain injury, which consisted of my cerebellum (the part of the brain that controls balance) being neatly sliced in half, my occipital lobe (which controls vision) was injured, and my temporal lobe (responsible for processing auditory information and memory) was also impacted. This does not include the 6 broken bones or all the bumps, bruises and thrashes that covered me. The initial consensus from the doctors was grim. I wouldn’t survive. I was in a coma and things did not look good. Miraculously, by God's will, Power and Presence, I did.
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