so proud of all the bleeding disorders advocates from across the country who took to Washington, D.C. this week to lobby for continued support for of the hemophilia treatment centers around the country. these centers are VITAL for the care of bleeders around the country and the roughly $5million dollars of annual federal funding is split amongst the 130-something (I think - someone correct me if my # is off) centers which offer comprehensive care for our rare disease. our community really rallied for our legislative rights during the blood contamination crisis - as crisis often bonds people - but it's to the great credit of our community's leaders that we've maintained a strong voice, as times of peace can too frequently lead to complacency,which of course only leads to the next crisis.
speaking of pre-empting crisis - Stop The Bleeding!, my comedy web series about hemophilia designed to engage young bleeders through comedy - is back in production this weekend! the episodes were a blast to write and I can't wait to be back with our wonderful team. these episodes will touch upon:
- importance of wearing medic alert jewelry
- importance of health eating
- importance of "person first" language
- importance of bringing factor on trips
- importance of community
- empowerment of women with bleeding disorders
- empowerment of people with hemophilia b
- empowerment of people with vWD
- hemophilia fun fact!
im sure we'll be posting pics to the facebook page and on instagram (#stbhemo).
super proud that my team - the brooklyn nets - hired the first ever openly gay athlete in the 4 major american sports. im with the base that looks forward to the day this isn't a story, but just as it mattered when jackie robinson played in brooklyn, this matters. given the ability to communicate and learn through the internet, it feels like the journey toward acceptance of gay athletes in sports will be a much smoother one than black americans and hispanic americans face. i hope.
trying to make some lifestyle changes - eating right, getting enough sleep and exercise is a continual battle for me. it seems to be for everyone, frankly. when you think about that super healthy friend, arent they always either going to the gym, preparing their meals from home, declining invites to parties? that's because everything comes at a price!right now, i'm trying to move very fast on a number of professional fronts while working on a very new living situation. there are only so many hours. the importance of prioritizing and managing time effectively becomes more apparent to me all the time. that's why ive gotten better at being okay with myself even when i come up short. no one's perfect, and no one can do everything they want all at once!
one thing i do hope to reduce is the amount of travel in my life. since january i've been in something like 15 cities, on 6 flights, and driven roughly 4500 miles. it's tiring, and it hurts the aforementioned attempts to alter lifestyle. variables encourage habits. stability gives space for change.
but if i didn't think all the variables would pay off, i wouldn't be doing it.