I’m on the last day of vacation, so there won’t be a long post about this one, but basically… Ocata now has not one but TWO extremely recent NIH grants. This one is for Retinitis Pigmentosa. Now, I’m going to make a shameful admission… I’m an America’s Next Top Model addict. ;)ANTM doesn’t make it onto science blogs too often (or even science-y layperson blogs), but there’s a good reason here. Back in the fourth season, there was a contestant named Amanda. She was slowly going blind from Retinitis Pigmentosa, which is why I think the judges didn’t allow her to win. It was a very sad story and actually makes it hard to watch reruns of that season. By this time, I think she’s gone completely blind. But this grant shows that there is hope for her and everyone else who has the same terrible condition.
Okay, so let’s put this issue in context. I am not an atheist.(Although my sister is– hi, Chris!) But the actions of religious groups related to Right to Try laws are becoming really disturbing, and quite honestly, hypocritical as could be. Hypocrisy has got to be my least favorite quality, and the Florida Council of Bishops is putting on a big display of that quality right now.
The Florida Conference of Catholic Bishops and Florida Right to Life now oppose the Senate version of the “Right to Try Act” (SB 1052) because Sen. Jeff Brandes, R-St. Petersburg, the bill sponsor, has added a provision dealing with end-of-life decisions by the patients.
The groups are specifically questioning an amendment that would let Florida join more than two dozen states that allow frail or terminally ill patients to arrange for a “physician order for life-sustaining treatment” (POLST), which outlines specific end-of-life procedures. For instance, the POLST — which is an arrangement between the patient and his or her physician — could determine whether the patient would receive tube feedings or would opt for medical care for “comfort only” rather than more intensive treatments.
So what does this really mean? They’re willing to keep terminal patients from the right to try experimental drugs so that they can keep people from the right to end their own lives. Whatever happened to ALL that concern about civil liberties they had for business owners???
In 2011, my life was shattered when I was diagnosed with a mysterious, incurable disease that always ends in blindness. The only hope on the horizon was a drug that broke all barriers in early testing. This drug, which replaces damaged cells in the eye, comes from the new class of stem cell based treatments that could cure the incurable, providing hope for patients with cancer, heart failure, ALS, cerebral palsy, and many more fatal and disabling diseases.
I survived the disease, and I now have the only remission on record. But a remission is not a cure. The stem cell drug I need for a real cure is now rapidly moving towards approval in the rest of the world, but in the USA, it—and all other cellular therapies-- are still stuck behind prejudice, ignorance, and lack of funding. Hundreds of millions of desperate patients with incurable diseases need these drugs.
That’s why I’ve gone on to fight for greater public education on stem cell drugs, knowing that our laws must be changed so that all of us can get access to the best treatments instead of our health and our lives being held hostage by special interests.
I’m now a patient advocate whose work on stem cells and patients’ rights has been published in outlets such as the Oregonian. I am a manager at popular science and financial blog www.stemcellinvestor.com and a frequent speaker at many venues across the spectrum, including churches, scientific conferences, and atheist groups, and everything in between. I’m also an advocate for Right to Try laws that would allow access to experimental medication for terminal patients at the state level. Read the entire story in my upcoming book, And the Blind Shall See: A Skeptic Patient Surprised by Faith, Science, Family, and Miracle Cures.
Ocata does have a Wiki page, of course, but it needed a little updating. There’s a LOT that could potentially be added because so much exciting stuff has happened recently, and today I added the news about the official completion of Phase I/II and the EMA pivotal trial designation. There’s still a lot that could be done, but I’m really glad that the page exists in the first place. Go and take a look!
If you don’t have academic access to full-text articles in scientific journals, you generally have a very hard time getting them. Believe me… I know what that’s like. In fact, the saga of my odyssey to OHSU to try to get a journal article is coming up in the posts! But if you want to read the entire article that was mentioned a couple of posts down (and you really should,) a science professional has very graciously stepped up and offered to send the PDF to all requesters. So here’s what you do. Copy and paste:
and replace the at with @; you know the drill. We’re trying to evade the evil spambots. Request the article:
So here’s some news from the latest issue of Discovery magazine:
Discover’s 100 top stories of 2014 is jam-packed with the best in science from the past year. From space exploration to medicine, technology, paleontology and environment, we’ve got every field covered.
Highlights include a spacecraft’s rendezvous with a comet, the origins of the first Americans, how to defeat hackers and an inside look at the Ebola outbreak. Don’t miss any of the year’s big stories — pick up an issue now.
What do you think should have won top story? Vote now in our contest and be entered to win.
So you know what you need to do, right? First, go to this link:
Discover Magazine, Contest Edition.
Click on “vote now in our contest.” If you’re not already registered, just sign in with Facebook. Then you’ll go to the “vote” page with a number of pictures with captions underneath them. Click on the one that says Stem Cell Success: The cells make insulin and restore retinas. That’s Ocata’s work!
AND… you could win a prize! You definitely want to do this. 🙂 We’re ahead right now, but we need to stay in the lead, so go and VOTE.
Yep, it’s an all-new account, where I will TRY to express coherent thoughts in 140 characters. CAN I do it? Um… I have a book posted elsewhere that’s on Chapter 126 and still going. But anything is possible! Yes! I can do it! 🙂 Anyway, here’s the link:
There are a lot of stem cell blogs out there, some of them better than others… a LOT better. and some a lot worse. 😛 Paul Knoepfler’s blog is one of those at the head of the pack for sure, although I don’t always agree with everything he’s been publishing lately, especially the glowing, overly optimistic, heading-for-a-fall-IMHO coverage of Takahashi and her iPSC cell based RPE work in Japan. (You know, the one where they’re moving terrifyingly fast and using humans as guinea pigs about a zillion times faster than they should have…) But anyway. We all have our own opinions. 🙂
It’s also good to branch out. And that’s why I’m recommending this link to msemporda’s blog!
The Amazing Stem Cell Science Blog. THIS, I tell you, is an expert. Stem cell science, sector analysis, biotech company analysis, news… he has it all. And he’s somehow able to keep from rants…. I can’t do that, and I admit it… So check it out. 🙂