This Giving Season:
Please Donate to the UMDF
As you probably know, I work at Caring.com, a website devoted to caregivers of the sick and elderly. Caregiving is an issue that is near to my heart because my father was diagnosed with an extremely rare, terminal condition in 1992, when I was a sophomore in high school. His condition is so rare, only his family is known to have the exact form of it, but it is part of a class of diseases called Mitochondrial Disorders.
Mitochondria are the power plants of the cell and they are pretty cool little guys. Evolutionarily, mitochondria used to be their own organism, but a long time ago, they merged with one of our primordial ancestors and formed a symbiotic cellular relationship. They have their own DNA called mDNA and in my Dad, that DNA is broken. This breakage prevents him from converting ATP (cellular fuel) all the way into energy. This means that simple tasks that you and I take for granted like walking a quarter mile are near impossible. Organs, the brain, and the nervous system do not generally like running low on energy. Strange symptoms like uncontrollable movements, cramps, seizures, and vertigo can occur without warning. On top of all that, the disease has given him diabetes and he’s 100% insulin dependent.
At the time of his diagnosis my father was given two years to survive. Our family mentally prepared itself for the inevitable, but my father refused to give up. He researched his own disease and started experimenting with his diet, medicines, and food supplements. Finding things that helped and iterating methodically and scientifically. After a few years, he found a combination of diet, medicine, and supplements that have slowed the progression to a crawl. My father is disabled, but his quality of life is pretty good for someone who is supposed to have been in the grave for 16 years now. We consider ourselves very fortunate to still have him in our lives. I am very proud of him – it is his pure dedication and relentless will to survive that keeps him with us. I don’t know about you, but I don’t think I could eat virtually the same diet for a decade and still be sane.
(At this point, you might be wondering if I am risk to get this same disease. I appreciate your concern, but fortunately for me, this disease can only be passed from mother to child because sperm do not have mitochondria.)
But this is about as “happy” a story of mitochondrial disease as you’ll ever hear. For most, the onset of mitochondrial disease occurs at a very young age. These young children don’t understand why they can’t go outside and run around with their friends. Their parents have to hold them while they have seizures. And most die before they ever reach puberty. Mothers are left to outlive their children and to deal with the immense sense of loss and guilt of having passed on this condition to their children and wondering if and when they might themselves become symptomatic.
About 1 in 4,000 children in the United States will develop mitochondrial disease by the age of 10 years. Up to 4,000 children per year in the US are born with a type of mitochondrial disease. Like most rare diseases, pharmaceutical companies do not pursue cures because the small number of people with the disease makes it not worth their while. So the United Mitochondrial Disease Foundation (UMDF), a non-profit, was founded with the goal of providing support and research grants to scientists who are working on finding a cure or treatments.
So I have decided to make Compass “Charityware”. Charityware is free software with a mission. If you use this software and it makes you more productive, increases your company’s bottom line, or nets your more take home per gig, then I ask that you would please make a Tax Deductible donation on behalf of Compass to the UMDF. It only takes a few minutes of your time and the money you donate will make a difference. If your business uses Compass, please see if they will donate or perhaps they might have a matching program during the holiday season for charitable giving.
Over the next few months, I will be working hard to get compass to version 1.0 and for over two years now I have been tirelessly to make stylesheets suck less. I have given many of you a level of personal support that most project maintainers do not provide. All free of charge. It would give me great pride if you all of you would do something that I cannot: Collectively give a sum of money to the UMDF that would far exceed my own ability to donate to them directly. I estimate that there are 10,000 to 20,000 users of compass. If each user gave $50, we could raise a $1 million. Will you do your part?