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From Where I Sit


On a Roll

I have reason to be depressed. In fact, I’m pretty sure I am depressed. You’re very kind, if one of your responses is to think you’d like to help. Thank you. I’m not as depressed as some people I know who are very dear to me, but when I am depressed it gets my own attention particularly (further feeding some people’s fires that I am a self-absorbed narcissist even though I only scored 24th percentile in narcissism screening which I did a couple months ago, for the record).

Frankly some of it has got to do with this mid-winter weather, and how I currently long for my annual trek to the tropics to break the cycle and get out of the funk.  This year Kathy is joining me, fittingly across Valentine's Day, for our 25th Wedding Anniversary.

I’m posting today to try and break a snap of non-blogging as Nevus Outreach begins 2017, the year we will celebrate our 20th Anniversary (Nevus Outreach was conceived on July 1, 1997). Time to turn over that new year leaf and pledge to do a better job of keeping information flowing! PLEASE hold me accountable, I welcome it!

Do you ever have a great idea, only to learn that everyone you talk to has no shortage of comments about everything that’s wrong with your idea, and why it won’t work? You know in your heart that you’re on to something, and either they just don’t get it, or for any of a number of other reasons they are reluctant to support you in it? Welcome to my life. It’s hell having vision and dreams, but somebody’s got to do it, and have the audacity to actually try and get it accomplished.

It’s thankless except that it’s not.

I am pleased to share with you that the Nevus Outreach 20th Anniversary will be the year we cause the creation of a standard of care for people who are born with big nevi like my daughter Megan was twenty years ago. Through a series of meetings of networks of world nevus experts this year, everyone is now in agreement that we can achieve consensus on how to manage this condition from birth onward, including care issues and challenges that vary from country to country around the globe.

With the help of a large number of professional colleagues, we have settled on an approach to this goal which will get it done either by the end of 2017 or in 2018. Very notably this brings into the circle and further accommodates a network of neurologists (and some non-neurologists) who have already been working independently to create guidelines for the management of neurocutaneous melanocytosis (also known as neurocutaneous melanosis).

Now all we have to do is raise the money to get it done, and do it. If this is the only thing I get done this year, it will be a personal goal that is more than enough to cap 20 years of effort.  If you are reading this blog because you have an interest in a standard of care for patients who are born with large congenital nevi or neurocutaneous melanocytosis, and you wish to know how you can help, you should contact me – mark@nevus.org

With that, I wish you the best for 2017!

No Time Like the Present

Out of practice as I am at writing blogs (I won't bore you with excuses), I just directed my entire High School class to come check out our web site (Pasadena High School, class of 1976, 900+ graduated), so I thought I should write something here to greet them if they drill in as far as "Mark's Blog." Um, yeah.  almost 20 years ago my daughter was born with a giant m Read more...

Gotta Love Washington - Part 2

I mentioned that I would tell more about how hard all 27 of our National Institutes of Health will be working to not let rare diseases fall through the cracks going forward. In another sweeping legislative move, Congress mandated your National Institutes of Health to create a Strategic Plan for the next 5 years. This makes me chuckle quietly, because I remember when Nevus  Read more...

Gotta Love Washington - Part 1

Started my fall off with a bang – If I would be allowed for a moment to assert that "fall" starts when Labor Day is over. Tuesday I attended the Advisory Council meeting of the National Institute of Arthritis, Musculoskeletal and Skin Diseases (NIAMS), as I try to do when possible, and seriously savored a couple instances of happy-feeling about some things getting do Read more...

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     Mark Beckwith

Executive Director
Nevus Outreach

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