The President has just announced a new initiative to focus on developing "Precision Medicine".
The youtube video of the announcement is here. (I don't remember how to embed youtube)
https://www.youtube.com/...
Obama’s ‘precision medicine’ initiative could bring insight into disease
By ARTHUR ALLEN 1/30/15 10:00 AM EST Updated 1/30/15 2:27 PM EST
The White House on Friday unveiled a $215 million program to study genes of a million Americans in various stages of sickness and health, with the hope of gaining vast new insight into diseases and how to cure them.
The Precision Medicine Initiative, which President Barack Obama announced in his State of the Union speech, will bring new funding to federal health and science agencies to build data that flows between medical clinics to labs that sequence the human genome and gather other data. The goal is to find more targeted personalized approaches to treatments and cures — sometimes called personalized medicine.
Read more: http://www.politico.com/...
Here is the White House's fact sheet.
http://www.whitehouse.gov/...
NBC report:
http://www.nbcnews.com/...
As some of you may know, over a year ago my baby granddaughter was born. We were thrilled at the thought that we would be grandparents after we thought it was not going to happen. I always told my kid she wasn't a cow and didn't have to "reproduce" on our account. Nevertheless, she married and then chose to become pregnant.
The brith was difficult and the wee one suffered from meconium aspiration and rushed into NICU.
http://www.nlm.nih.gov/...
While there, one nurse asked my daughter angrily, "What are you eating?" as the baby's stool was loose and greasy. I was drivng them back and forth to the hospital as they tried to feed her small amounts of breast milk and be there for her. She was suffering from failure to thive and could not go home till she gained weight. It was a mighty effort to be there as much as they could to feed her. Finally she came home and after a few weeks the call came for the pediatrician that she had Cystic Fibrosis.
Please click on the wiki because I don't want to write about that. It is depressing.
http://en.wikipedia.org/...
More after the delicate baby lace...............
We were reelling from the news!!! My husband was destroyed as he had taught a university course that included Cystic Fibrosis as a one mutation disease. I sort of knew about it vaugely, but my daughter and her husband knew nothing about it. As we came to first learn about it, it became an unfolding nightmare.
We were told to take the baby for a sweat test and sure enough it came back positive.
It's a test to make the skin sweat and test it for salt, too much salt is positive for CF.
With the internet we kept finding out more and more horrrible things about it. Facebook is full of "angels that can breathe now".
But then we got her to a CF clinic downtown just ten minutes away, which is wonderful with an incredible team. This was not without some problem as the team was at one hospital and then moved to another as San Antonio hospitals competed to build a major children's hospital. That is too long a story to tell but in effect the Catholic hospital staff was calling our son in law and saying not to trust our UTSA CF team. They had moved the whole pediatric team to the UTSA hospital.
Once we started with the CF team and following their guidence, drug regime, and percussive therapy, the results were obvious!!!
Unfortunately she was diagnosed early with pseudomonas and had to be on and off Tobi antibiotic. Right now She is free of it. Also does three percussive vest treatments with Albuteral, Ipratropium and Pulmozyme. Just came off another antibiotic treatment of 14 days for a staph and strep infection. Normal lungs don't have problems with these and other "bugs' but sticky CF lungs get damaged every time, leading to swiss cheese efffect of ever increasing areas of damage.
She is also on a high calorie diet with extra short chain fats added to her diet plus antacids and vitamins. She takes pig enzymes because her pancreas does not work to break down fat. We use a lot of hand sanitizer and she drinks Boost 1.5. Her nana makes food just for her with lots of fat, bacon and butter.
And also this other piece of research was recently reported.
Human lungs successfully grown in a lab for the first time
http://www.medicalnewstoday.com/...
Back to the precision medicine story: Ivacaftor (Kalydeco)
http://en.wikipedia.org/...
http://www.cff.org/...
The drug has now been approved for people with CF ages 6 and older who have at least one of 10 rare CF mutations. The FDA is currently reviewing a new drug application for ivacaftor for children ages 2 to 5 who have certain of these mutations.
The FDA is also reviewing an application for approval of ivacaftor in combination with the potential drug lumacaftor in people with two copies of the most common CF mutation F508del.
Ivacaftor is also being studied with VX-661, a CF drug in development, in people with one or two copies of the F508del mutation.
Two copies of the F508del mutation are what Madeline has. It is the most severe and most common mutation. It doesn't cure it but it decreases the amount of exacerbations. She is not yet elligible to take it. She is too young. It A few months ago we saw xrays of her lungs and they are good and healthy but her doctor pointed out very few tiny circles of damage. Then she said, "The disease marches on."
But so far she is doing ok coughing occasionally. Right now she is a healthy toddler wearing her nana out. She is full of energy and light. She is good right now but a bad cold could just be devastating. She is very outgoing and likes people. She would love Cedwyn.
So as you can see we are pretty excited about the President's Initiative!!!!!!
Thank You President Obama for this New Initiative on Precision Medicine.
Also thank you to the CF Fountaion. They are an amazing organization.
http://www.cff.org
http://www.cff.org/...
Today at the White House, President Barack Obama shared the story of Bill Elder Jr., a third-year medical student with cystic fibrosis, describing how Elder’s life has changed since he began taking a breakthrough CF drug in 2012.
Thank you for giving Madeline a running chance.
We took her to the zoo!
We need as many healthy and painfree tomorrows for her as we can get.
11:10 AM PT: A viral video of a young woman with CF.
http://www.fox17.com/...
2:43 PM PT: A movie as suggested by Laurel in CA
http://www.thepoweroftwomovie.com/...