While at Washington Days this year, I met what I consider a unicorn. His name was Will. He was 28 and he had just recently become involved in the bleeding disorders community. It turns out his fiancée had encouraged him. This is the kind of rare occurrence I’m entirely intrigued by – how does someone who hasn’t previously been involved in the community become involved? I know I found my way in through mutual friends. I’m forever grateful, because everyone at NHF has since become like my family. And when I meet people like Will, it makes me think about how we can get more young adults involved in the community.
I think that’s a question that is often asked and should continue to be contemplated: How do you reach us? “Us” being the millennial demographic. How do you keep us around and keep us interested? I think at times there can be a disconnect. For example, I had a blast participating in the planning committee. I remember when someone suggested doing a technology session. It would have been great for an older demographic, but some of these basic social media rules—we grew up with them. At the time, fellow National Youth Leadership Institute member Phil, Grant, an intern at the National Hemophilia Foundation (NHF), and I looked at each other and simultaneously spoke a resounding “no.” It’s OK, though. Things like that can be tough to figure out. That’s why we’re here to clue the older generations in, but that’s why there needs to be more of us young people. There are few people beyond NYLI representing the 20-something demographic in any other factions of NHF.
Many people in our generation live with their parents. The statistic, according to a 2013 Pew Research Center study is about one-third. It’s not because we’re lazy and taking an 8-year college plan. At least not most of the time. Within NYLI, a vast majority are in graduate programs, law school or medical school. The ones who are in college or other pathways are leaders within those sectors. We’re hard workers, and we’re passionate. So where do you lose us? Even though we know we can be seen as older children, we’re adults. Our lives are nothing like the previous generation. We have access to better medical care that wasn’t available for previous generations.
This leads me to where I am now. I am officially rotated off of NYLI. It has been an amazing four years. I have met some of the most incredible people and been presented with amazing opportunities I would never have had otherwise. The people I met through this program are—and I’m sure will remain—my best friends. I have no doubt about this. It is sad, and yet it’s time. Every time new 18-year-olds were brought into NYLI, I felt very old. Sachin, another now-former NYLI member, referred to me as “the cool hipster mom” of NYLI, as I made sure everyone was well taken care of and where they needed to be.
In my “last hurrah” as an NYLI member, I attended NHF’s most recent Annual Meeting. I’ve seen so many changes over the years with NYLI. We now have spring leadership training, we’re more active at a local level, more NYLI members are speakers at Annual Meeting, and Steps for Living programs are being facilitated by the group. What happens afterward? I’m not sure. At Annual Meeting, I noticed very few people in my age demographic of the late 20s present. I hope this changes. Maybe it’s a financial aspect. I would love to and plan to stay an active volunteer in the community, but opportunities to do so aren’t readily advertised. If someone who has been so entwined in the community doesn’t know how to continue staying involved, how are we to bring in new people?
I asked my NYLI family what they would like to see for the future for our demographic. Being able to financially afford meetings was huge. Smaller, regional meetings that are closer to home and target our age group could be a huge step toward accessibility. Many former NYLI members are accomplishing amazing things in their lives. We young people need and want to see this.
It should be acknowledged that NYLI has been the gateway leadership avenue for incredibly successful adults. Original members are now late 20s and early 30s. I know a fair number of them, and I think the community at large would be impressed to hear where they are now. Also, when young people see other young people involved in a community, they want to get involved too. Basically, if they see young people in action, more will follow, and this suggestion came directly from my NYLI peers. It’s how many of them decided to get involved. We might not be at a stage in life where we can contribute financially, but we know we can still make a difference in other ways. We’re just looking for our opportunity to jump in.
In my music room, I have a frame that was gifted to me by NHF as “NYLI Alum – Class of 2014.” I immediately put in a group photo from Spring Leadership training this past June. Any time I’m in that room, which is fairly often, I look at it fondly and reflect on the past few years. I don’t know what the future holds. Those who remain in NYLI are extraordinary leaders, and the bleeding disorders community should expect amazing things from them in the next few years as they move through the program.
As for me, I’ll be looking to see how I can be an effective member of the community in a different role. Our future as a bleeding disorders community is so bright. I’ve been fortunate to be initiated in through NYLI. I can say with certainty, I have changed for good.