Meeting Angioma Alliance members

A few weeks ago, I got the opportunity to meet up with some other Angioma Alliance members that also live in the Los Angeles area and Connie (ambassador and founder of AA) with her daughter Julia. It was an awesome and also humbling experience to meet others who's lives are affected by cavernous angiomas. Several of the people in attendance have "multiples"...which to me is like a whole different deal. Having more than one means you most likely can't just have one surgery and be done. Not that one brain surgery is any walk in the park, but having more than one surgery multiplies your risk of complications, deficits, recovery, and associated stress. Also, if you have multiples, you could develop more angiomas at any time, meaning greater risk of bleeding over time, and constant uncertainty. It could also mean that there is a genetic factor involved, resulting in a 50/50 chance of any of your kids inheriting the faulty gene that creates angiomas. Point is...to have one stinks...to have many really, really stinks!! So in the group of 15 or so...I felt lucky to have only had one angioma. It also keeps what we had to deal with it in perspective. I feel like I have no right to "complain" about how hard it was. Sure it was tough, sometimes it still is tough, but really...people with multiples have to deal with what I went through plus so much more. Meeting Connie and Julia was an honor, after all, they started Angioma Alliance and they are very involved in finding a cure. Make sure you and everyone you know with a cavernous angioma signs up for  the international patient registry...even if you already had surgery www.angioma.org/registry I have said it many times, but Angioma Alliance was a tremendous resource for me from diagnosis through today, and supporting this organization is near and dear to my heart. Connie and Julia are continuing their trip cross country so check the website if you would like to meetup. www.angioma.org/roadtrip The meeting was great and left me wanting to do more to raise awareness for this unrepresented illness/condition...whatever you call it. I have been brainstorming fundraising ideas...but unfortunately my brain doesn't work all that well and so far I have no ideas. 5ks are popular, but there are so many in my area for other causes already and I'm not even a runner...it just doesn't make a lot of sense to me. I like some of the ideas that other people have done...a wine auction, dinner event...but I have no idea where to get started...so the brainstorming continues. Everything takes longer when your brain doesn't work quite right. ;) If I can ever figure out how to upload the picture we took of everyone at the meeting, I will post it. (It is at the end of almost 3,000 photos on our camera and it will only load all of them.Safe to say I am not tech savey in ANY way.)Take away:
 1. If you have not signed up for the registry...do so now...a cure depends on it.
2.    If you are able to meet Connie and Julia...do so...it is an opportunity you don't want to miss.