Sharing to make a difference
Recently I had an amazing opportunity to share my HHT story with a group of researchers from Recursion Pharmaceuticals as well as local medical professionals in the Salt Lake city area. It all started by saying ‘Yes’ to a Facebook invitation. I saw on Facebook that Cure HHT was looking for a patient to volunteer to share a few experiences with researchers who are working on an HHT project. I thought that sounded like a cool opportunity as I always enjoy sharing with people how HHT has made me who I am today and raise awareness to help others to have success stories as well. Little did I know what an experience I was going to have.
When I arrived at the event, I learned that Recursion Pharmaceuticals is working on something truly amazing. They are repurposing medications that are already FDA approved to help HHT patients. This amazed me because it is much cheaper and faster than developing new drugs. This is truly the future for HHT patients as well as so many others who suffer from rare diseases that are not adequately funded.
My parents and grandparents attended the event as well and following the presentation by Cure HHT Grant Recipient, Dr. Paul Oh, Professor of Neurobiology at the Barrow Neurological Institute, I shared about a ten minute version of our family’s history with HHT. I absolutely loved the opportunity because I was able to thank each of them personally for their efforts to help progress the medical technology that blesses each of our lives every day. My family has had many tragedies over the years as we have lost multiple family members to HHT, but because of the research that is done every day and technology continues to advance, the quality of life for HHT patients continues to increase. As screenings become better and more readily available, we are often able to catch things before they result in major physical problems or death. As the work that these researchers do continues to progress my future will be brighter, and I can only imagine what life will be like for my future children.
As I shared my story and gratitude for their service I was shocked by the tears in the room and the kind words they each had to offer following the seminar. The more we share who we are with others, and allow them to glimpse into our lives, the bigger the difference we can make in our local community.
This is wonderful. As a researcher, sometimes we tend to dig so deep into a detail of a question that we forget the big picture motivations behind it all. Such a great thing to be able to remind them and fuel their fire with your story. ♡♡
Lindsey,
thank you so much for sharing your story with the company employees as well as us patients. I made the same experience some years ago, when I was invited to a pharma company to talk about PH (pulmonary arterial hypertension, another vascular proliferative disease and sometimes occurs together with HHT). The more than 100 employees in the audience, were touched to tears, fianally FEELING how important their job is.
It is very good and motivating to share our experience with the many people who are involved in bringing us a cure.
Thank you!
Ralf Schmiedel
HHT Germany, extended board
HHT Europe associated
In Australia we are trying to do the same with Matty’s Soldiers in raising awareness and funding into research to find a cure for HHT. We lost our son/brother to this disease in 2011. He was only 26.
Whoa! This might be one of the most helpful things on the subject I have ever found. Thank you for your hard work.