If you are affected by cavernous angioma you must act to be part of the cure! This condition is too rare and without active involvement of those affected there is little hope of a less invasive cure. You and all those you know with cavernous angioma NEED to register with Angioma Alliance. Oh, I would have loved to have another option to treating my angioma that didn't involve major brain surgery!!! Today brain surgery is the ONLY treatment...but it doesn't have to be that way forever. They are getting very close to drug trials, but the lack of patient population is a huge road block to expedited drug trials and solutions!!! Please, please...read the section below from Connie Lee of AA....and make sure you and everyone you know with cavernous angiomas registers no matter where you live. This is an international registry, so finding lots of people all over the world should not be that difficult. Like Connie says,"Without you...there can be no cure."
The Take Away Message from the 2011 Scientific Workshop by Connie Lee
The big topic of this year's workshop was treatment. Angioma Alliance, as an organization, is committed to being part of an international consortium for clinical drug trials. There are many roles that we will play, but foremost is our obligation to provide participants for trials. As I wrote in the final day summary on the blog, we were told it would take, at a bare minimum, 1500 people, and this is if we are willing to spend extra time pre-testing medications before human trials. If we want to start sooner, we need more people - 30,000 isn’t too many. If everyone who is eligible for a drug trial were to register today in our online Patient Registry, there would be no delays for additional animal testing, no difficult decisions about which medications not to test. Scientists wouldn’t have to feel like they have just one shot to get it right. We’d start working on getting a trial approved tomorrow. While I am very grateful to everyone who has taken the time to register, at this point, the lack of registered potential participants is the obstacle that is causing the most concern and is potentially the most disruptive.
This is Thanksgiving week in the United States, a time when families come together. Please consider using this family time as an opportunity to discuss the importance of participating in finding a cure with every affected member of your family. Heck, set up a laptop in the den near the TV and make sure everyone gets a chance without having to miss a play. Want to find a way to end that conversation with cousin Earl? Try “Oops, look at the time. Let me see if it’s my turn to register.” Same is true if you are trying to get out of that Thanksgiving chore. “Sorry, I can’t wash those pans right now. Gotta register.” If you live outside of the United States, don’t wait for your next family reunion – register today. It takes no more than 10-20 minutes to fill out the Patient Registry form at http://www.angioma.org/registry. My Thanksgiving wish would come true if we could announce to the scientists on December 1st that hundreds more of us have stepped up.
It would be tragic if what held up a non-invasive treatment was not science or money or bureaucracy, but rather us and our unwillingness or apathy. For common illnesses, it is quite possible to sit back and wait for other patients to participate in trials. For cavernous angiomas, there just aren’t enough eligible people to allow anyone with a cavernous angioma to play the waiting game. We’ve been adding “Without you, there can be no cure” to many of our messages this year. I’m not professing to speak for everyone in leadership in the organization, but I mean that statement literally. If you have a cavernous angioma and choose to sit back, there will be no cure. Period. It really is that simple. Now go register. And have a great Thanksgiving.
[Please note that if you have already signed up for the registry, you might want to go there now (yes, right now!) and make sure that your information is up-to-date. I just did, and found a number of things that had changed since I first registered.]
The Take Away Message from the 2011 Scientific Workshop by Connie Lee
The big topic of this year's workshop was treatment. Angioma Alliance, as an organization, is committed to being part of an international consortium for clinical drug trials. There are many roles that we will play, but foremost is our obligation to provide participants for trials. As I wrote in the final day summary on the blog, we were told it would take, at a bare minimum, 1500 people, and this is if we are willing to spend extra time pre-testing medications before human trials. If we want to start sooner, we need more people - 30,000 isn’t too many. If everyone who is eligible for a drug trial were to register today in our online Patient Registry, there would be no delays for additional animal testing, no difficult decisions about which medications not to test. Scientists wouldn’t have to feel like they have just one shot to get it right. We’d start working on getting a trial approved tomorrow. While I am very grateful to everyone who has taken the time to register, at this point, the lack of registered potential participants is the obstacle that is causing the most concern and is potentially the most disruptive.
This is Thanksgiving week in the United States, a time when families come together. Please consider using this family time as an opportunity to discuss the importance of participating in finding a cure with every affected member of your family. Heck, set up a laptop in the den near the TV and make sure everyone gets a chance without having to miss a play. Want to find a way to end that conversation with cousin Earl? Try “Oops, look at the time. Let me see if it’s my turn to register.” Same is true if you are trying to get out of that Thanksgiving chore. “Sorry, I can’t wash those pans right now. Gotta register.” If you live outside of the United States, don’t wait for your next family reunion – register today. It takes no more than 10-20 minutes to fill out the Patient Registry form at http://www.angioma.org/registry. My Thanksgiving wish would come true if we could announce to the scientists on December 1st that hundreds more of us have stepped up.
It would be tragic if what held up a non-invasive treatment was not science or money or bureaucracy, but rather us and our unwillingness or apathy. For common illnesses, it is quite possible to sit back and wait for other patients to participate in trials. For cavernous angiomas, there just aren’t enough eligible people to allow anyone with a cavernous angioma to play the waiting game. We’ve been adding “Without you, there can be no cure” to many of our messages this year. I’m not professing to speak for everyone in leadership in the organization, but I mean that statement literally. If you have a cavernous angioma and choose to sit back, there will be no cure. Period. It really is that simple. Now go register. And have a great Thanksgiving.
[Please note that if you have already signed up for the registry, you might want to go there now (yes, right now!) and make sure that your information is up-to-date. I just did, and found a number of things that had changed since I first registered.]
