Tonight was fun.. We had our friends Kevin and Margaret (aka Marge) over for dinner. Kevin is/was one of our Sam’s best friends.. Marge is pregnant and due next week (!).. Kevin has been out of Vermont for the last 4 months in officer training down in Texas… so it’s really good he was able to finish in time.
Here they are now
And here’s Kevin (and I think Sam !) in 1997 when he was… something like 5
It was really great catching up with both of them.. they are so excited for this baby !.. Stay tuned !
Hi point of today was getting to meet Jenesis Rothblatt. Jenesis is the daughter of Martine and Bina Rothblatt. (Martin board member of Beta). Jenesis gave a wonderful talk today at beta about her life and her role at United Therapeutics
It’s an amazing story… Jenesis was born with a very rare congenital disease called pulmonary arterial hypertension which was usually fatal. The only therapy for the disease in the past was a full lung transplant. Martine rothblatt, who is the founder of XM radio is an amazing inventor, as well as a loving father. Through his persistence and help with many others she was able to invent a drug treatment regime which allowed Jenesis to live a relatively normal life.… Based on that experience, Martin created a company called United therapeutics that treats this disease as well as many others. United therapeutics as invented a process which would allow organ donation of lungs that would otherwise not be suitable for transplantation. The lungs heart, the last organ to be donated, and often are too sick of themselves to be placed inside a sick person. The company takes the donated lungs and nurses them back to health, and then provides them to recipients… Which creates thousands of more transplantable lungs in a year.
Our sam was a multiple organ donor… He was not able to donate his lungs.
OK… I’m getting pretty choked up here. I’m not exactly sure how to explain how hearing this made me feel… I think everyone would understand that anything that makes organ donation more successful and easier would be a gift that comes out of tragedy.
The treatment fo Jenesys’s condition used to involve taking seven medication’s a day… Now through innovation it’s down to a single pill, and she’s able to live a very normal life and is an executive at United therapeutics. She’s a fantastic ambassador for that company… Living proof of what science can do
What united therapeutics is doing now is really amazing. They have been doing genetic research on pigs to create organs are engineers to be implantable in humans without major rejection, disease. The implications of this are tremendous…. United Therapeutics have already done 2 modified pig heart xenotransplants as part of a special protocol which can be used in cases where no other viable option for the recipient exists. In both cases, the patient who received the heart had no other options, and under took the experiment as a way of getting a short bit of more life and contributing to scientific knowledge. So far both patients died after several weeks of extended life.… That’s likely going to be the case for any such innovation… It will take many tries. But the goal is so important that innovations like United therapeutics is doing with Xeno transplant must continue..
Another option is going to be a totally implantable artificial heart.. That’s where my brother Billy and his colleagues at Biavacore comes in.. (watch this space)
In addition to organ rehabilitation and genetically engineered animal organs, UT is also working on hybrid organs that will be grown from human tissue on a 3-D printed matrix… T Martine’s investment in BETA is targeted at being able to move these organs quickly and in an environmentally sound way.. he vision for the company is truly inspiring.
Jeneses’s talk was also inspiring.. she told the human side and the technological side in a very moving and personal way. I was watching her talk remotely while working at home., but I was so excited that I drove into work and was able to meet her and tell her about our Sam’s story. I gave her a Samstone..too
My deep thanks to Jenesys, Martine, Bina and all the folks at United Therapeutics for all they are doing.
Pretty routine day for the first work day of the year.. Spent most of it catching up and prepping for the new year.
The highlight of the day was Diane’s Yoga class she does these on Tuesday nights whenever we’re around… We do an hour or so of relaxing yoga then have a potluck.. It’s a wonderful way to get friends together .. especially in the winter..
Happy new year everyone!… Who knows what this year will bring?… All I can say is I’m going to try to make it a fun and good one.
We slept in late today. Are they at fluffy yesterday was really fun and pretty hard work being outside for that long. I got to say though being around all those people really energized me.
Once we were properly awake, we decided to go for a New Year’s hike. We haven’t been up Robbins mountain… Which is in our backyard… For a good long while so that’s what we chose. There was very little snow and lots of ice and even some mud. And the thing is straight up. Just the thing to s kick in the new year.
At the top of Robbins mountain, there used to be an airplane beacon tower.… Our house f was called the “beacon light grange.” or many years the car our house is about 2000 feet below.… we used to hike to it all the time and climate… We’ve even slept up there. Now, though it is a massive cell tower… Kind of imposing and maybe even dangerous to approach. Even so it has its own beauty.
On the way up we ran in to our good friend Clint.. We saw his and his dogs footprints before we saw him. Once we got to the top, we had fun following his footprints to our favorite lookout. It’s a spot that used to be on the long trail.
The hike down with much easier than the hike up. We were marveling at the cool ice crystals that were emanating from the ground. Somehow related to the perfect temperature and the perfect (?) Amount of rain we’ve been getting.
Later in the evening we tried out one of dianes newest toys. I got her a a Pasta “Chitarra” (guitar).. Weed first seen one when we visited Navellie in Abruzzo. It’s a box with a bunch of stretched small wires that is used to cut pasta.… Deb came over and we tried it out. It was really fun fast and very delicious. ‘Diane made pasta with browned onions and fish sauce… Sounds weird, but was so tasty.
Great first dinner of 2024… we’re off to a good start 🙂
