Mission and Goals statements can be pretty dry and ours is no exception, so we wanted to share a little about Alliance to Cure Cavernous Malformation’s role in the lives of cavernous malformation patients and their families, clinicians, and researchers. (Alternate names for cavernous malformation are cavernous angioma, cavernoma, and CCM.)
How did Alliance to Cure Cavernous Malformation start?
We started at Connie Lee’s kitchen table in 2002, between her daughter Julia’s third and fourth brain surgeries for hemorrhaging cavernous malformations. At that time, there was no patient organization – no way for those affected to find each other or impact the future of care or research.
Almost immediately after creating the website, with content reviewed by Dr. Issam Awad, the organization’s volunteer Scientific Advisory Board Chair, patients and their families came together and the real organizing began.
This website is great. Thanks for all the information.
Wait! Come for the information, but stay for the community.
Our website has a textbook’s worth of information to help you make better decisions about your health, that’s true. We work very hard to keep it up-to-date and reviewed by experts. We believe almost every question can be answered if you use the Search feature.
But, there’s so much more to Alliance to Cure Cavernous Malformation, both on the internet and in real life. Let us introduce you to other patients. Attend one of our virtual or in-person events. Participate in research. A cavernous malformation diagnosis can feel pretty overwhelming. We are here so that you don’t have to feel alone. We are here to offer you opportunities to be part of the solution. Join us! Peruse the Community and Research sections of our website for details on how you can connect.
So Alliance to Cure Cavernous Malformation is just for patients?
We are driven by patients, staffed by patients, and patients are our reason for being, but we aren’t just for patients. Alliance to Cure Cavernous Malformation works closely with academic researchers, treatment developers, government, and medical professionals to change the future. We have hosted the International CCM Scientific Meeting since 2005. We develop and recognize a network of CCM Centers of Excellence that provide multi-disciplinary expert care. In one way or another, we are involved in every existing research project and treatment development program. We advocate for legislation to get more grant funding into the hands of researchers. In short, we drive research and we advance better care.
Is Alliance to Cure Cavernous Malformation an international organization?
Alliance to Cure Cavernous Malformation has numerous sister organizations around the world (21 at last count). We are all financially and legally independent from each other. That said, only a coordinated global effort will get us to a cure, so we talk frequently and join forces when we can. If you are reading this from outside of the United States, please feel free to use our resources, but also find your country’s patient group. They need you.
How do you pay for all of this?
We are funded by individual donors like you – people who donate directly, host events, and encourage their friends and family to give. We accept minimal amounts of drug industry support (5% of our budget as of this writing) to avoid conflicts of interest. We do not receive government support at this time. Our staff is small – the equivalent of 7 full-time national positions – and we rely on an army of volunteers. We are grateful for every dollar and use each wisely. In an average year, 80% or more of our income goes toward direct program expenses.
We focus our research funding on creating shared resources that all researchers can use. That includes the annual scientific meeting, the DNA/Tissue Bank, the patient registry, and an informed, mobilized patient community. We’ve been very good at this, and we are the only ones who can play this role. As we grow, we’ll be sharing news of other projects in which we are investing.
I have questions.
Great! We’d love to answer them. We’re not doctors and can’t offer medical advice, but we know lots of other things. Find us on social media (use the little icons on the right or bottom of your screen) or drop an email to firstname.lastname@example.org. We don’t have a staffed phone line – remember, 7 FTE and thousands of you – but we try to write back. Don’t forget to try the online support groups first. Other patients and families often have better answers, from their experiences.
Because Brains Shouldn’t Bleed?