Sunday, September 03, 2017

An App to Help Bring an End to ALS



I met Steph Courdin in the summer of 2015 at an Ice Bucket Challenge to raise awareness and funds for ALS. I was dressed as “Super Carpe Diem Woman,” a goofy super-hero who’s ‘power’ is to live life fully. Steph, a photographer, was taking pictures of the event with a very fancy looking camera.  He was smiling as though he didn’t have a care in the world. The fact that Steph was in a wheelchair was my only clue that he might have ALS himself.

Though it’s easy to ‘live life fully’ when you have a fully functional body, I believe the real super-heroes are people like Steph who set that example, despite an ALS diagnosis. Steph doesn’t let the disease stop him from hitting the trails, traveling, and most recently, “rolling” his daughter down the aisle on her wedding day, via a standing wheelchair.




ALS, a fatal, degenerative disease, also known as Lou Gehrig’s Disease, gained national attention during the Summer 2014 Ice Bucket Challenge mania. Until then, it was a comparatively unknown disease with little progress made towards a cure. It’s encouraging that the money raised from the ice bucket challenges are making a difference, but the cure won’t come overnight. In the meantime, Steph had an idea to help.

In 2015, Steph, in addition to living a full and active family life, created the non-profit ALS Never Surrender Foundation aimed at helping with research and ultimately finding a cure for ALS.  Having a background and experience with data analytics, Steph had the idea of creating a mobile application that would collect data pertinent for ALS patients. By monitoring the progression of patients as well as their treatments, researchers and doctors can gain valuable knowledge and feedback about treatments that will slow or even stop the progression of symptoms.

Steph shared his idea with some contacts in San Diego and in the Fall of 2016, the designs and use-cases became a reality with the availability of a beta version of the ALS iNVOLVE application. In January of 2017, students from Georgia Southern University pitched in to finish the first version.  

To help fund this massive undertaking, Steph initiated ‘Art4the Cure’ – a group of 42 artists from 9 countries and 14 states who have donated art to help raise money for the cause. Additionally, Steph started a ‘Faces of ALS’ portrait series to feature and highlight others who are surviving and thriving despite ALS.

Steph’s courage, determination, and will to ‘never surrender’ are an inspiration. For those of us who are healthy, we are reminded not to take that health for granted. And for those who do have ALS, Steph is a reminder that living fully is always possible. He’s a leader who is not going to let ALS stop him from living his dreams and finding innovative ways to move the world closer to a cure for ALS. He is, in short, the super-hero who shows us all how to live life to the fullest.


Please help Steph and ALSNeverSurrender launch this life-saving application by donating at http://alsneversurrender.org/donate.  If you have ALS or know someone who does, get involved by using a beta version of the application.

Saturday, August 12, 2017

GISHWHES Must Continue!

I've been participating in the Greatest International Scavenger Hunt the World Has Ever Seen (GISHWHES) for the past week and it has been a blast. Teams get a list of 198 'missions'to perform... each worth various points... No team has ever completed all of the missions... some of them are virtually impossible.. but with 198 to choose from, there are many that are very achievable. Some are silly, some will challenge your intellect or creativity, and many are heart-warming.

There are many things I love about GISHWHES, so I was really bummed out when I heard this was the last year it would be held. So... this blog post is my attempt to Save GISHWHES!!

Last year, GISHWHES started on the same day that I'd happened to be invited on a trip to the Great Northern Island in Minnesota with 11 other people. I told them about the hunt and we had so much fun that Chris, the island host, said that we could do the hunt every year on his island.



This year we had a blast, again! GISHWHES is the perfect thing to do when you get a bunch of friends together.

The missions we completed ranged from Tree Hugging,making a mosaic out of dog food, pancake art, and creating a hammock self-containment unit, complete with live entertainment, and a Romeo and Juliet sock puppet show.





There were missions aimed at understanding one another (giving flowers to someone practicing a religion different from your own) or meaningful (take your parent back to the place they were when they were 10) and life-changing (helping a dying woman with her final wish.)

Things I love about this hunt:
* The registration fee and many of the missions go to charitable causes.
* The hunt combines fun with helping humanity.
* The emails leading up to the hunt are full of humor.
* You join teammates from around the world.
* The missions tap into hidden talents and creativity. There's something for everyone.

This is definitely the type of activity that fits my motto: Carpe Diem! 

Though I don't think I could pull off a hunt of this magnitude, if GISHWHES dies, I'll try and pull of MOSH (My Own Scavenger Hunt) next year.  But I'm still rooting for GISHWHES to survive. Long live GISHWHES!

Tuesday, January 31, 2017

January, 2017 – Managing my resolutions with Agile

January is very motivating for me. I’m always excited about starting all my resolutions and this year was no different…  well, except maybe in my ‘methodology.’ I decided to use a lot of “Agile” techniques in ‘managing’ my resolutions this year. It’s been so successful that someday I may write a book about it… but for now, I’ll stick with a blog post.

Putting everything on a backlog
In Agile, we have the concept of a “product backlog.” In software development, a backlog would be a list of requirements or functions that need to be coded, but in my personal life, it’s basically a ‘to do’ list of things I want to do for the year.  

This backlog will never be complete even by the end of the year because I’ll keep adding more to it.  I also might change my mind about what’s most important for me to do this year. That should be a good thing..  After all, I can decide what I want to add to my list and since one of my mantras is to “life life fully” that means I always want a big backlog of fun and fulfilling things to do.  But, because I’m OCD when it comes to “todo” lists, I like the satisfaction of finishing things! Having a never-ending, ever-changing todo list can be stressful!

The sprint backlog is the week’s todo list
Enter the sprint backlog.  In Agile, we take a subset of the “backlog” and decide what we can do in a “sprint” (which, in my personal life, is 1 week). Every weekend, I had a little “sprint planning” session where I created a “sprint backlog,” taking high-priority items off of my long ‘product backlog’ and putting them into my sprint backlog.  Unlike the product backlog, the sprint backlog is something we commit to finishing during the sprint. This helps satisfy my OCD personality that wants to finish things. I feel so productive and I’m very motivated to finish the things on my list because they’re realistic.

How did it work?
This was the most productive January I’ve ever had! I had a list of things I wanted to accomplish for the month (these would equate to “features”) that I split into things I could accomplish in a week (equating to “user stories”). 

The 4th sprint ended on January 28th, and I decided I would take the final 3 days of the month to reflect and plan my February. (This is equivalent to the “Retrospective” or the “Innovation/Planning (IP Sprint)” in Agile.  One of the things I wanted to do during this 3-day period is write a blog post and post some of my favorite pictures from the month, so here goes!


Some favorite memories from January

  
We're a family of puzzlers!
I'm a lucky Grandma!

Meg introduced me to Aerial Yoga

I'm much more comfortable in an upright position!

Short road trip to Southern CO with Matt and Scotty with a stop at the Hercules Beetle..

and Bishop's Castle! Spectacular winter site!

Women's March was empowering and a true show of unity and democracy.