cole lyman CS, Bioinformatics & Life

Wait for it Or not

Wait for it… Or not.

Wait for it… Or not.

When you can’t wait…

Wait for it… Or not.

When you can’t wait…

Source: http://www.consciousvanguard.com/blog/2015/10/22/patience-is-the-virtue

In a world where prayers to the ‘omniscient being of the universe’1 begin with OK Google, and more information than you will ever want to know are answered instantaneously. Furthermore, having the ability to obtain almost any product that one could desire with free 2 day shipping doesn’t help us learn how to wait either.

What is the point of waiting?

What value does patience add to our lives? Learning how to wait is valuable because at some point in your life there will be something that you can’t receive/achieve instantaneously. There are many worthy endeavors that will require you to work long and hard, and if you aren’t patient enough to work to achieve those goals you will never achieve them.

Patience is arguably one of the most difficult attributes to develop. I believe the only way that you can develop patience is by waiting for it (get it?).

-Cole

Precision Medicine Rogue Therapeutics Harvard

Precision Medicine- Rogue Therapeutics Harvard 2016

Precision Medicine- Rogue Therapeutics Harvard 2016

Rare disease, genomics and patient-driven medicine may be terms that you have never heard of. All of these terms relate to precision…

Precision Medicine- Rogue Therapeutics Harvard 2016

Rare disease, genomics and patient-driven medicine may be terms that you have never heard of. All of these terms relate to precision medicine, medical treatments that are tailored to a specific patient.

These patients usually have some sort of rare disease, which is any disease that affects less than 200,000 people (in the United States). However, while the diseases themselves may be rare; having a rare disease is not rare. There are approximately 30 million people in the United States that suffer from a rare disease.

What is the purpose of precision medicine?

The goal of precision medicine is to develop treatments to alleviate rare diseases. The range of treatments available are quite limited because 80% of rare disease are genetic based. This means that while traditional medications could treat rare diseases, they will never permanently cure genetic disorders.

Undiagnosed Disease Network

Even though Precision Medicine as a discipline is still in its infant stages, there are many organizations that aim to make precision medicine available to every patient. One such organization is the Undiagnosed Disease Network (UDN). This is an initiative funded by the NIH to aid those with rare diseases to have a diagnosis. While only 50% of the current existing rare diseases have a foundation studying and supporting patients with that disease (let alone a cure or treatment for that disease), the UDN can help patients towards a diagnosis.

Karen, Ornella & Lysogene

Another example of an organization that supports rare diseases and have successfully produced one form of precision medicine (so far) is Lysogene. This company was founded by a mother, Karen Aiach, whose daughter, Ornella, was diagnosed with Sanfilippo Syndrome. At the time of diagnosis the doctors stated that the prognosis of Ornella was highly dysfunctional childhood development and an early death at the age of 20 (if not earlier).

“There will be no cure for 20 years, go home and enjoy the time left with your child.” — The doctors diagnosing Ornella

In spite of the doctors’ prognosis, Karen was determined to do something about her daughter’s health condition. She did research and talked to the right people and eventually brought a treatment for Sanfilippo Syndrome to clinical trials. Her daughter still lives, and has given hope to other patients with Sanfilippo Syndrome.

Unfortunately Karen and Ornella’s story is still rare when it comes to the rare disease community. There are thousands that die annually without any cure, or even any hope for a cure. This must change. As research progresses and discoveries about rare diseases are made, more cures will come. Karen, among others, are the pioneers of precision medicine. I hope for a time when all patients diagnosed with a rare disease will be as fortunate as Ornella.

You can read more about Karen and Ornella’s story here at labiotech.eu.

-Cole

The god of Google

The god of Google

The god of Google

Disclaimer I don’t mean for this post to be a sermon, these are only my thoughts. I am passionate about these topics because it is the…

The god of Google

Disclaimer 
I don’t mean for this post to be a sermon, these are only my thoughts. I am passionate about these topics because it is the nexus of two of the most important parts of my life, faith and technology. My views reflect only myself, not any of the organizations that I am affiliated with including Brigham Young University and The Church of Jesus Christ of Latter-day Saints.

The first of the Ten Commandments
The first commandment of the Ten Commandments explains where we should place God in our lives.

This commandment is:

Thou shalt have no other gods before me.

(Exodus 20:3)

While the gods that the ancient Israelites would have had above the true God may have been made of wood or stone, the gods that we can currently have above the true God are much more subtle. They surround us everyday, and may be constructed of silicon and bytes.

This is not to say that technology is inherently evil. It is simply a tool, just like how the ancient Israelites used tools composed of wood or stone. The issue at hand is not the object itself, the issue is in how you view and use the object. Do you use the tool, or do you worship it?

“Where you invest your love, you invest your life” (Mumford and Sons- Awake My Soul)

If I may add, “where you invest your time, you invest your love (and your life).” Christ said “whosoever shall lose his life for my sake and the gospel’s, the same shall save it” (Mark 8:35). I believe that this scripture is telling us less about ‘losing our life’ in the sense of dying for someone else, but rather ‘losing our life’ in the sense of spending our time in the service of others.

I feel that it is essential for all people, religious or not, to audit how they spend their time. Is how we spend our time consistent with what we love, or what we want to accomplish in the world? If it is inconsistent, then there is cause for change.

Which god do you serve?

We can so easily be consumed by the world around us. It is easy to always do what you have always done, but you can only expect to get what you have always got.

Are your actions in line with the ideals and standards that you have? If not, what are you going to do about it?

-Cole