Role of Angioma Alliance – FAQ

We're more than just a website.

Mission and Goals statements can be pretty dry and ours is no exception, so we wanted to share a little about Angioma Alliance’s role in the lives of cavernous angioma patients and their families, clinicians, and researchers.

How did Angioma Alliance start?

We started at Connie Lee’s kitchen table in 2002, between her daughter Julia’s third and fourth brain surgeries for hemorrhaging cavernous angiomas. 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.

What’s with the name?

We’ve always believed that cavernous angioma is the most accurate term for the lesion, and the scientific community has been catching up, although it’s taken a long time. Plus, alliteration. We’ve contemplated changing the name from time-to-time – to something more general or to a name that included cavernous malformation or CCM. Our European partners have included the term cavernoma in most of their organization names. But, we’ve never found a better alternative. Because, alliteration.

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 Angioma Alliance, 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 angioma 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 Angioma Alliance 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. Angioma Alliance works closely with academic researchers, with treatment developers, with government, and with 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 Angioma Alliance an international organization?

Angioma Alliance 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.

What’s our future look like?

It’s looking bright, especially on the long-term (5-10 year) horizon.  Below is our path to a cure, and with your participation, we will get there sooner:

The path to a cure includes Expert Information, Peer Support, Advocacy, International Scientific Meeting, DNA/Tissue Bank, Patient Registry, Genetic Testing, Clinical Centers, and finally Real Treatments.

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 and have just a few foundation grants. Our staff is tiny – the equivalent of 3 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% of our income goes toward direct program expenses.

We do not fund research labs directly.  Our budget is too small to have an impact in this way. Instead, we create 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.

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 info@angioma.org.  We don’t have a staffed phone line – remember, 3 FTE and thousands of you – but we try to write you 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?

That’s right.

 

Updated 6.20.20