What the HHT?

A blog for the HHT community

Legislative Activity Impacting HHT

Recently, I have taken a more active role in the HHT community as a member of the legislative committee. It is so important for lawmakers to pass legislation that promotes and supports research and development, especially for rare diseases like HHT. I have been pleasantly surprised at how passionate I am about advocating for legislation…

Read More

Genetics 101! Happy New Year, HHT Community!

I thought I would use this time and space to update you on the newest Friday family addition, our son, Theo! Theodore was born last month and came out a healthy, hefty bundle of snuggles and cuteness. Our life has been a giant blur of moving to a new duty station, having a baby, chasing…

Read More

I am So Lucky!!!

A silver lining is a funny thing. You wish you could see it while you are mucking your way through a crisis, but you can’t, and it often doesn’t show up for a long time, if at all. My silver lining appeared in the most unexpected of ways. This HHT story seems like it should start with…

Read More

Holiday Reflections

November is one of my favorite months due to the beautiful change in the air with the crisp and cool mornings and nights; the gorgeous auburn colors; the beginning of tasty comfort foods such as hot apple cider and chili; the return of professional football and basketball; and finally, the Thanksgiving holiday and all of…

Read More

Playing the Medical Case Manager – How to Keep it all Organized

Does anyone else find it overwhelming to keep the appointments, medical offices, and treatments all straight? To remember the entire medical history, to have to explain HHT for the thousandth time, or to spend forever waiting on a hospital line to speak to someone? When you don’t have an actual medical case manager, you often…

Read More
Page 1 of 71234567