Action Packed September

In a normal world, I probably wouldn’t have packed so many events into 1 month. For sure, it will make future months seem like a breeze.

September included:

LightAide Backpacking Launch: 6 lucky families will be able to test LightAide and write stories (on social media). In the end, there will be a vote and 1 family will get to keep the LightAide. So far, WonderBaby has gotten awesome submissions and really great interest.  Two great families have been announced.

ONC Consumer Health IT Panelist: I was invited to Washington DC to participate as a panelist to discuss patient engagement in App testing during the ONC’s Blue Button challenge.  It was thrilling to share (briefly) Alexis’ story and our journey – and it is truly important for me to share with others Alexis’ experience so that they are inspired to create new Apps and technology that help us care for Alexis better.  I said on stage “I have been Alexis’ blue button for the past 7 years and it’s truly exhausting” – I’ve been the person aggregating Alexis’ information and sharing it.  I’ve been the one to keep the latest information on her medical conditions and bring it up with doctors who might need to know that information.  It’s a ‘weighty’ job to be the glue for 45+ people on Alexis’ “team”.

LightAide Launch & Official Press Release:  Like bringing a child to the world, this product has2013_yearly_calendar2 been quite an effort – coordinating Philips, Perkins, TERC, consultants, contract manufacturers – it has been truly a great experience. Alexis and I walked into Philips Color Kinetics in August 2010-with a crazy idea that lights could help Alexis. And we can see it in reality today – persistence and belief.  These are huge for the ePatient movement, but also for project / program management. Organizing the LightAide project may not be as complex as the human body– but for sure, bringing a technology product to live in a special needs’ education world— understanding the market, understanding the users, understanding the use — all important aspects which thankfully I live everyday.   (By the way on the off-chance that you’d like to buy a LightAide — click here, or if you’d like to contact me regarding LightAide or maybe even donate to a family – email info [at] lightaide [dot] org)

MassMatch: I shared the story of the invention and demonstrated the use of LightAide for the MassMatch Board at Natick Library. It was very well attended, including many of the leaders in AT equipment loan throughout Massachusetts. I was very fortunate that a friend recommended me and I was very honored to speak about LightAide, especially on the actual day that we were publicly announcing it’s availability!

Abilities Expo: Expanding a Child’s World with Light was the title of my talk at the Boston Abilities Expo. It was an absolutely fantastic talk and even more important – fantastic that I left time afterwards for families to interact with the LightAide. It is so very versatile it was great to have kids of all ages interested and engaging. Perkins Products had a LightAide at their booth – and it made me so proud to walk by and see many people interested and excited about it!  One family even asked me where they could buy it — right after my talk. That makes me so happy – not because I ever imagined myself in sales — but they were able to see how their son could engage and how captivating the lights were. I know people will find it difficult, but I’m still at a loss of words to describe how awesome it feels to know that LightAide might help open doors to a child — for learning, for communicating, for interacting with the world.

Stanford Medicine X: Maybe it’s because it’s the last conference this month, or maybe it’s because it’s my alma mater, or maybe it’s because of the great reviews the conference has – but I’m most excited about returning to Stanford. When I did my PhD at Stanford, I really thought “wow, this is the most intense learning I’m going to have in my lifetime”.  Maybe I even though “wow, this is difficult, I don’t even know how I’ll get through this.”  Little did I realize that 5.5 years after graduating, I would really be experiencing the biggest challenge of my life – coping with Kaitlyn’s death in utero and hoping that Alexis would be just fine.  My talk is planned for Saturday Lunch 🙂  I’m excited about sharing our medical journey and what it means to us as a family.

So, remind me again not to schedule other “Septembers” – but I have enjoyed each conference and engagement.  It is just compounded by “back to school” season, “full time job” season and “managing complex medical kid” season. It’s a great juggle that I enjoy. . .



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