What the HHT?
A blog for the HHT community
Awareness
HHT Rare! Grab Your Swag
Pick up your HHT RARE swag today during Rare Disease Awareness Month in our online store, and start spreading HHT awareness while benefiting an amazing cause!
Read More12th Annual Stoner Open
12th Annual Stoner Open July 9, 2021 | 1:30 p.m. (EST) Farmstead Golf & Country Club Spend the day on the green to support Cure HHT! Join Steve Stoner and friends at the Farmstead Golf & Country Club for the 12th year in a row to support an important cause. Let’s make this year’s tournament…
Read MoreLift Your Heart for HHT Celebration Kickoff!
Help our rare disease mascot flight! February is Rare Disease Month and we want to SHOW OUR STRIPES in a big way! During our Lift Your Heart for HHT tribute celebration from February 22 through February 28 (Rare Disease Day®), for each donation made, we’ll honor your loved ones who are either affected by HHT…
Read MoreRare Disease Month
The month of February is all about feeling the love and here at Cure HHT we’re embracing all the love as we highlight our very special HHT Community during Rare Disease Month. February was officially declared Rare Disease Month in 2008 with February having the “rarest” number of days. Thirteen years later, we continue to be rare but stronger…
Read More‘You got blood on your face, you big disgrace’
Currently, one of the most prized possessions our kids have is the Queen Greatest Hits CD. When Eleanor was a baby, we played Bohemian Rhapsody by Queen or the Muppets version for her every time she needed an echo or to have a test done at the hospital. The love of Queen passed to Theo and the CD is queued up in the car ready to go. Right now, We Will Rock You is…
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