This is it. It's also the most important
thing I've ever written, anywhere, ever. Papers, presentations, proposals,
reports, white papers, books, magazine articles, schoolwork, emails, blogs.
Fair warning, I'm going to ask you for
something. Well, two things.
This is an awareness post, and a call
to our community (and others to which I belong, I'll be cross-posting)
for some assistance for one of our own.
Many of you know
Troy Reimer, SNAPPS senior developer for 9 years, and one of my former
instructors. Troy has been a quietly prolific developer (quietly as in,
not as much on the social network as on the work), has been a speaker at
Lotusphere for 9 years, of course Collaboration University, and various
LUGs. He was co-creator of the Quickr Templates, created the JSONreader
and JSONwriter open source projects, and has helped countless clients solve
some of the most challenging problems and development tasks. Troy's contributions
to the community - ours, his, his church, and more - are enormous, and
(unlike me) he does not seek the glory, marketing value, or attention.
He just gives.
Troy and his wife Emily are the proud
parents of four beautiful, vibrant, active children. They've played at
my house at Christmas parties, I've visited them at their home, and Troy
is late if he leaves at 5:01 during the week to see his kids. He had the
two older boys when he started at SNAPPS (of course I'd already known him
since before they were born), and then in a twist of fate Emily was pregnant
just as they were finalizing an adoption! So they decided to go ahead and
adopt young Lucy from China and had young Matthew. That was eight years
Matthew in particular enjoys
swimming and is a member of the Ad Astra Area Aquatics swim team in Lawrence,
Kansas. He's a bright, energetic boy who has healthy sibling rivalries,
a disdain for all the appropriate foods we're supposed to hate as kids,
and is particularly happy when daddy gets home from work.
In the times he has been at my home,
Matthew has been a dynamo. At SNAPPS Christmas dinners when we have 13
kids in the house, he has always seemed to lead one charge or another up
and down the stairs!
On February 5, Matthew had the flu.
And through the night, it kept getting worse.
Dr. Gerald Raymond,
director of neurogenetics at Kennedy Krieger Institute in Baltimore, said
the classic childhood form of the disease occurs between ages 4 and 10.
It’s the most severe and affects only boys. Symptoms may include visual
loss, learning disabilities, seizures, deafness, fatigue and progressive
dementia. The most common are behavioral changes such as abnormal withdrawal
or poor school performance.
“There often is a rapid deterioration and often they are left in a vegetative
state or die within a year or two years after disease onset,” he said.
There is no cure, but there are limited therapies including a bone marrow
transplant, gene therapy and Lorenzo’s oil. Augusto and Michaela Odone
developed the oil after their son, Lorenzo, was diagnosed with the disease
in 1984. Their story was depicted in the movie, Lorenzo's
Raymond said there is significant risk with a transplant, and gene therapy
is only being done in Paris and on a research basis.
The entire article in the Lawrence Journal-World
can be found here.
If any hope can be found in the face
of such news, it was that (after a couple months of research and applications
and the ferociousness of parental love) Matthew qualified for experimental
study and treatment at the Kennedy Krieger Institute in Baltimore. His
MRI was promising, he was still seven years old at the time (barely) and
hadn't shown the neurological symptoms -- yet. So in July, Troy packed
up his family and went to Baltimore for a week. And they will be doing
this at least until Matthew is 13.
Matthew will quite likely require a
marrow transplant in the future.
Baltimore is the new "vacation spot" for the Reimers, if you
can call it that. Experimental treatments, specialists, and a very special
diet are now lifelong experiences for Matthew and his family. And the expense
- beyond insurance - is and will be adding up for years.
So to my requests.
First, Matthew is registered with a
bone marrow registry at www.marrow.org
and the Reimers, I and all our friends encourage you to register yourself
and your family as donors. You must live in the U.S. or Puerto Rico to
do this, be in good health, make a commitment to donate if someone needs
it, and there is an optional financial donation. Optional. They will send
you a kit, you swab your cheek, and send it back. That's all there is to
Second, if you have the means, even
if it's just a little, please consider donating through PayPal to Matthew's
medical expense fund. Defraying these mounting costs will help significantly
over the years as all of the unexpected but absolutely critical trips,
physicians and treatments are undertaken by Matthew and his family. It's
very simple, just visit PayPal.com,
click "Send Money" (Family and Friends), choose an amount and
payment method, and in the "To" email address type "email@example.com"
. Alternatively, I have pasted a preconfigured PayPal donation button below.
Just click. This button will have a permanent place on the right very soon.
Just wait. A Second!
Mon, Dec 9th 2013 10:50a Rob Novak Second session that is. In all the excitement of getting early notice of my first session “Running a Successful Pilot Program with Social Business Software” I somehow had it in my head that it was going to be my only session accepted this year. So I was a little surprised and happy to learn that another of my submissions has indeed been accepted.
This one will be a lot of work, but hopefully worth it for the attendees.
So look for it you Quickr fans and don’t miss it. I’l [read] Keywords: collaboration
A subtle change over there to the right
Thu, Dec 5th 2013 8:50a Rob Novak It was 7:26 AM today when the email came. I am pleased and honored to be included once again in the group called IBM Champions! Here’s what it takes to be an IBM Champion, and what the benefits are…
One benefit is that you can use the logo, so I got to tag “2014″ onto my caption over there on the right.
Per the announcement site:
These individuals are non-IBMers who evangelize IBM solutions, share their knowledge and help grow the community of professionals who are focuse [read] Keywords: collaboration
FCC Small Biz Cyber Planner 2.0
Mon, Oct 21st 2013 2:10p Rob Novak Now that the U.S. government’s back up and running, I wanted to point out a great resource for small and medium businesses – heck even large businesses that are implementing security plans. The Federal Communications Commission (FCC) has published a simple-to-use tool for generating your own planning guide.
A couple weeks ago I was speaking at a plastics industry conference in Miami, and the executives in the audience were quite impressed with such a public resource. Well, the first [read] Keywords: policies
Another success story on the iPad
Thu, Jun 6th 2013 10:30a Rob Novak Some of you may recall from my old blog, a few years ago I posted about the head of state of a certain unnamed country using our $9.99 app SnappFiles with a Lotus Quickr server to deliver public addresses and speeches. The setup was such that speechwriters could make changes up to the last minute on stage, and the speech could be reloaded in an instant. That was fabulous to hear, and was even moreso when I discovered (again, through the hush hush grapevine) that Steve Jobs actually responded to [read] Keywords: lotus
New Kid on the Social Block
Wed, May 22nd 2013 3:30p Rob Novak To say Jerald Mahurin is a “new kid” is a bit misleading. Heck, he’s older than me and I’m practically antediluvian. However after nearly 20 years in the industry, having been my instructor when I first learned LotusScript in 1995, then with SNAPPS for the past ten years and currently its Vice President, it’s my pleasure to welcome Jerald to the not-so-yellow-verse community of IBM Collaboration Solutions bloggers.
His first article is a tutorial-level undertaking, [read] Keywords: collaboration