Who we are

The main purpose of the MEN1 Foundation is to support individuals, like myself, who are not medical professionals, but who wish to learn about MEN1. As I learn, I will organize tidbits of basic info, recent research, and perhaps the occasional observation or opinion about the disorder and its treatment. I hope this will help me learn more effectively, and that other MEN1 patients and their families may find it useful.

Again, I am not a medical professional and am not qualified to give medical advice. I'm an electrical engineer in the middle of my career who has a found that a beautiful young family member has MEN1. I want to help, but don't have any medical training. I wish I could quit my job, go back to college, get a degree in medicine or microbiology or genetics or pharmacology, and then be a part of a research team that makes a great, new advancement in MEN1 treatment: a better means of early detection; an improved treatment; even a cure; Yes, a cure for a genetic condition... a "Yes, BUT...":
  • "Yes, MEN1 is a genetic condition affecting every cell of the body, BUT we have found a way to contain its effects..."
  • "Yes, MEN1 tends to produce multiple tumors, BUT we have found a treatment that arrests their growth..."
  • "Yes, loss of ability to produce menin disrupts multiple cellular mechanisms, BUT we have found another way to control cell proliferation in targeted tissues..."
OK, perhaps an engineer like myself is not likely to make this kind of career change or achieve this sort of breakthrough. Maybe you, in your own personal circumstances, also are not likely to personally discover a cure for MEN1. But if MEN1 has touched your life, then a firm, positive response is called for. The first step is to get a firm, calm grip. The next thing is to develop a habit of prayer, if you haven't already; only a fool would fail to ask (and continue asking) God's help in such a matter. The next thing, I think, is this: as you pursue the best treatment you can find, learn as much as you can about the disorder confronting you. Study. Keep studying. Read about MEN1. Begin to understand how it works, how it does what it does. Learn about how it is treated, and where there are treatment centers that have recognized experience with MEN1. The goal is not to obsess about the disorder or let it become the main or only interest in your life. The goal is to understand MEN1 well enough so that you can help seek out the best possible treatment and minimize MEN1's negative impact on the lives of you and your family. Learning enough to engage your physicians intelligently on MEN1 treatment is bound to help you identify the most appropriate care. Don't be deterred if on occasion you find a physician not accustomed or willing to being engaged on an meaningful level by his patients. You may need to seek out a different physician, one who will take you as seriously as the situation demands.

Finally, I ask for your prayers for my loved one, and I promise in turn to pray for you and your loved ones, especially those who may have MEN1.
Do you or a loved one have MEN1? Do you have questions about MEN1? Do you have suggestions about how to promote progress in MEN1 research, or how to improve the content of the MEN1 Foundation website? Do you want to help further the mission of the MEN1 Foundation? Please contact us. John Robin, Editor info@men1foundation.org ...or, leave a comment:

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