I moved to Boston in Sept with my family to work in Allston. It’s been a great first 4 months. My kids have settled in and my wife and I have made some great new friends. The real test for us was going back to Ireland over the holidays but we’re back in Boston now a couple weeks after our trip and loving it here just as much – we passed the test!
The one question I kept getting back in Ireland was “What do you miss most?” and the answer wasn’t an easy one. Not because I missed a lot of things but because there wasn’t any one thing in particular that I missed (apart from my Irish Mammy obviously!). I have my “team” with me here – my three young kids and my wife – and that’s where I get my energy.
It’s not the only place I get my energy. I get it from the interactions I have with the people I work with, extended family, my friends here and in Ireland and the people I run with. I like to think of each of these groups as discrete teams; each of us in the team has our strengths and weaknesses but what makes us a good team is in one definition of the word:
“Successful teams learn how to help one another, help other team members realize their true potential, and create an environment that allows everyone to go beyond their limitations”
I’m a firm believer that the bigger a challenge overcome by a team, the stronger they will be at the end of it. For me that feeling of collective achievement is something that far surpasses that of individual achievement.
As I’ve discovered as a member of the Running for Rare Diseases team, even marathon running – which some might consider the most individual of challenges – can elicit that feeling of being part of a team. Similarly, being affected by a rare disease may seem like the loneliest of experiences, as each of these diseases affect less than one tenth of one percent of people.
What strikes me though, when I hear the stories and read the blogs of rare disease patients, is that initial sense of individual and insurmountable challenge seems to turn into an even greater sense of belonging and being part of a team. As patients and patient parents (as approximately 50% of patients are children) start to learn more about their condition, they realize they are part of a community of patients who in turn have their own community or team – their families and friends, physicians and healthcare professionals and organizations like NORD.
We can all be a part of that team. Being an advocate for Rare Disease Awareness is easy and it doesn’t mean you advocate any less for other causes. I can run for Multiple Sclerosis. I can run for Cancer research or for any worthy cause. But what I can do for Rare Disease has already been done for other more common conditions.
Because of their rarity, the most significant challenge for rare diseases is simply awareness. So much so that it is estimated approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease. 95% of rare diseases do not have an FDA-approved treatment. For me it’s a numbers game. The greater the number of people who are aware of NORD and other rare disease organizations, the more likely it is that someone will make a connection that could lead to diagnosing someone. And if that connection doesn’t happen, it at a minimum extends the influence organizations like NORD have in advancing the rare disease community’s needs.
When I look at some of the real challenges I’m faced with in life, I take some solace in knowing that it’s never the case that I need to carry it alone. I have a home team. I have a work team. I have a friends team. I have a family team. I have a running team. I know that if my goal is to be at my best when they need me, they will be at their best when I need them…….and I can be certain that there will be many times that I will need them.
I am also part of the rare disease awareness team. Many of you are part of that team too, and while I don’t know you, I do know that we aim to do our best for one another and the rare disease community. And the more of us there are, the more I know we’re making progress.