National meetings make for a great vacation!

A little less than three months ago I was in Santa Clara, California, for the Hemophilia Federation of America's (HFA) annual symposium. What's a symposium you might ask? You could think of it as a big conference where people from all over the bleeding disorder community come together to talk about important issues and topics. You could also describe this yearly event as an all-out fun fest where you get to meet new friends and hang out with old ones on the streets of a new city.

I like to think of the symposium as a mixture of both. Although I think it's very important to go to as many sessions as possible and participate in the discussion about how we can all be better advocates for our community; my main goal is to meet newcomers and show them just how fun a weekend with bleeders can be. 

Time for a math problem:

Former Miss Rhode Island + up-and-coming comedian + basketball game + information on new longer-lasting products + choreographed dancing = one hell of a weekend.

Join us at the next national meeting in Orlando, Florida, with the National Hemophilia Foundation. Register now!

Ball So Hard(ly)

It was about 18 degrees outside as I sat in my hotel room in Erie, Pennsylvania, this past February. My friend Jay and I were having our morning coffee as we sat watching our daily dose of Sportscenter© on ESPN before we were to hit the road back to Pittsburgh. Highlights from the NBA games the night before were topped off with plays made by New York Knick Jeremy Lin. His quick rise to fame from a humble beginning stemmed from a plethora of injuries affecting the Knickerbocker roster. Both Jay and I share a common interest in basketball. We joked about how great it was to see a young kid making such big waves in the league and was very inspiring to the rest of us who always dreamt of having such an impact on a game. We then realized that instead of going to the nearest walk-on tryouts for the NBA, we really just wanted to play a game of pickup basketball.

Jay saw the upcoming HFA Symposium in Santa, Clara, California, as a perfect opportunity to get a group of guys together to play a morning pickup game on the last day we were all going to be in town. Doing this during one of our largest gatherings of the year gives a chance for like-minded guys, that may or may not have opportunities to play a fun, yet competitive game of basketball, get a chance to just wake up, do their prophylaxis treatment of factor [if needed], and go play ball. Not only would I be enjoying a favorite past time with some of my closest (and some of my newest) friends, I would be encouraging them to live their life in spite of our similarity that is hemophilia. Jay suggested I contact everyone I know that was planning on attending the event. I did some research to locate a few courts nearby. 

When we got to Santa Clara, I made sure to get the word out that people were going to meet up early Saturday morning (after the first two days of socializing, but before the last day of Symposium events) and play a couple small games. Knowing how news amongst this community spreads like wildfire, I was certain basketball games would be happening in our near future. The HFA Symposium went so well, as I had anticipated, I reunited with plenty of friends and families I have been fortunate to have met at previous meetings. 

When Saturday morning came along, I woke up early to assure myself that the weather was going to cooperate with us so we could play at the outdoor court just outside of our hotel. Unfortunately the west coast sky decided our 7:45 am start time would be the perfect time to start a nice steady rain to clean up the apparent mark the Symposium had left on the fine city of Santa Clara. Needless to say, the outdoor court was out of the picture, for fear of slipping, falling, several bleeds, and plausible liabilities that I wasn’t prepared to be held responsible for. I had already secured a backup indoor court less than 2 miles from the hotel. 

When I went to the lobby to see a gathering of 15 groggy-eyed, yet optimistic, wanna-be D-Wades and Durants ready to play ball, I knew it would turn out great.  Three full cars of people rolled up to the indoor soccer/basketball facility around 8:00 am. Several different guys with different levels of skill came out and it made for a great time. There were new bonds being made between all of us, lots of fun, and a small handful of ankle and knee bleeds requiring follow-up treatments and bed rest. Afterwards, we got together for a group picture and I remember thinking to myself that all of this happened because my buddy and I just wanted to play some ball. But to me, this was more than just a pick-up game. This was getting together with people I hope to know my entire life… and in my opinion, everyone that came won. 

Conquering the Lava Swim

One night this winter, over dinner, my older brother Pat had mentioned a competitive open-water swim that would take place in May, called the Lava Swim. It was 1.2 miles in the Barnegat Bay. I had been expressing interest in getting back in shape for months but kept finding convenient ways to avoid it. I planned to go back to something that I had always loved… getting back in the pool. I swam competitively when I was younger and I knew this is what could get me back on track cause it had worked for me before. I now had a goal and started acting on it.

In January, I started training at a local pool. I started out swimming 40-50 laps every other day. It wasn't easy at first and it was obvious that I had let myself get out of shape. I took the pain that came along with it as a sign that I was making progress. It got easier with time and eventually I built up to swimming 80-100 laps by May, as the race was approaching. I felt good, but was still anxious. Swimming in that open water would bring currents and would be a lot different from swimming in a pool.

I went through an open-water swim training course a couple weeks before the race and got in the cold water with a full wetsuit. It felt a lot different, but I was still feeling confident. I had to be confident because race day was only two weeks away.

On the morning of May 27th, at 4 am, I woke up to a crazy thunderstorm with pouring rain outside my home. The race was only three hours away and I had to travel east to the New Jersey shore. The storm was traveling in the same direction. I planned to meet my brother and his wife, Adrienne, there. They were taking the plunge with me. My older brother is not affected by hemophilia and he has recently become a rockstar at triathlons. He was a big supporter in helping me train and I’ve always looked up to him. 

There were tons of people at the beach when I showed up and the rain had slowed, with no thunder or lightning in sight. I got ready and got into the water with 150 other people for the start of the race. My heart was pounding and I knew the first couple minutes would be crazy in this large pack of people swimming. I got to the first buoy and was getting gassed about halfway through, but I just kept pushing like I never had before. It felt like the race was never-ending but I knew I wasn't in last place, as there was always someone behind me. I struggled running up the shore and I felt an exhaustion as if I had really given every last bit I had. I heard someone mention the time at right around 31 minutes. I ended up placing 47th out of 150 with a time of 31:00.8.

I lost 25 pounds and gained back range-of-motion in almost every joint, including my elbow. I also noticed that I was no longer having the inconvenience of spontaneous bleeds that I had experienced in the past. Although the race was a great accomplishment, it is just a start for me. I'm going to continue swimming and start running and biking, as well. I plan to complete a triathlon this year. Who knows? Maybe I'll even write about it.