Finding a Cure for HHT
in Our Lifetime
This Holiday Season it Starts with You
What's Possible for HHT in Our Lifetime
In the 26-year lifetime of our organization, generous donors like you have made possible so many significant advances in innovative scientific research, advocacy and awareness campaigns. You have helped us create 27 Centers of Excellence in North America – a number that is quickly growing– to ensure the best care for HHT is more accessible for our community. Now, with your help, breakthrough opportunities for lifesaving treatments are within our reach, as we continue to make enormous strides towards a cure.
You have helped us develop new treatment options for HHT. The first medical description dates back to 1865, and it wasn't until 1939 when pulmonary AVMs (PAVMs) were described in living HHT patients. Until 1978, the only treatment option for PAVMs was invasive surgery. Until this year, it was believed that embolization was the standard and best procedure to treat PAVMs. In our lifetime we hope to see the use of an oral pill that will reduce PAVMs, with additional therapies on the horizon for HHT patients.
Watch the Friday Family's Story and Give Generously!
If you would like to share your story as part of the “In Our Lifetime” Campaign, please read the information and instructions below.
In Your Lifetime and In Your Loved Ones' Lifetime
This holiday season, we invite you to share a personal video with the HHT community about what you have experienced and witnessed in your lifetime, or in the lifetimes of your loved ones. In doing so, you can help us raise much needed funds to continue our work.
The more we succeed, the greater the need!
Tell us how your struggle with HHT started and evolved in your lifetime, how it impacted you, what you have learned, and what you hope for the future. For loved ones who may have been fighting for decades, or for those for who care came too late, share the story of their lifetime in Tribute or in Memoriam.
Your stories will help others and will shine as beacons of hope this holiday season.
How to Submit Your Video
- Aim for your video to be 1-3 minutes in length
- Upload your story our special Dropbox Folder or email your story to [email protected]
- Film your story 'selfie-style,' or engage a family member/friend to film you as your share your story
- Plan what you are going to share before you start filming (don't worry if you need to do a few practice runs!)
- Film in a well-lighted space without distracting backgrounds
- Introduce yourself and tell your viewers if you plan to speak about your own lifetime or that of a loved one
- Speak clearly and slowly while regarding the camera
- If Cure HHT has helped you or your loved ones, feel free to share with your viewers and invite them to support Cure HHT this holiday season
- Make sure to thank everyone for watching!
We only get one lifetime - thank you for sharing yours!
PLEASE NOTE: By submitting your video you give Cure HHT permission to use it in whole or in part to support our “In Our Lifetime” Year End Campaign, and to publish it on our Facebook page, in our eNews and on our website. You also give us permission to upload it to our YouTube and Vimeo channels.