Northwest Angioma Alliance Community

Announcements of local get-togethers and events

Northwest Angioma Alliance Community

Postby oleblue » Wed Mar 21, 2018 2:52 pm

Hello Community Forum,

The Northwest Angioma Alliance Community of Oregon & Washington is officially "OPEN" to serve our community.

Our board members are:
Angela Johnson - Chair
Jennifer Roney - Vice Chair
Amy Clarke - Treasurer
Brandy Kozisek - Event Chair
Barbara Curtis - Peer Support Chair

We are still fine tuning our Community. Please contact us at We look forward to to meeting our Angioma Families here in the Northwest. We are working on a educational event for April 2018. More information to come.

Barbara Curtis
Posts: 36
Joined: Mon Aug 01, 2011 3:47 am
Location: Warren Oregon

Re: Northwest Angioma Alliance Community

Postby Barbara » Tue Jul 31, 2018 4:21 am

Hello AA Community,

It has been awhile since my last post, but Northwest Angioma Alliance Community covering Oregon & Washington which started on March 21st of this year is now 80 members strong. We have had several events in the last 4 months.

April 28th - Sand Flea Rally in Cloverdale Oregon. We had 4 Jeep "Racing for a Reason" with our logo Northwest Angioma Alliance Community on each rig. From that race we raise awareness of Cavernous Angiomas. We met members and new members there. Great first step.

Epilepsy Walk/Run- Downtown Portland. We wore our NWAAC new T-shirts and walked together to raise awareness. We even had a neurologist walk with us.

Providence Brain & Spine Institute - Brainwaves - Our chair person Angela Johnson was the speaker guest at this event held at OMSI - Portland Oregon. Angela discussed her journey and share with this group of neuroscienctist, neurologist, neurosurgeon, foundation director, epilepsy neurologist the importance of patient and physician relationship and as a patient creating her own NFL (Neuological Foundation List) of surgeon, primary, mental health, rehab, hospital that understand her disease as she has Familial CCM and two right temporal lobe surgeries. They heard her voice and the need to empower patient in their care. Knowledge and Compassion is a key element.

Last is our fund raiser with Dutch Bros in St. Helens. They donated two gift basket to raffle off in the upcoming events. Thanks Dutch Bros for your support.

More importantly we've learned that change come from us. Being our own voice and sharing knowledge and support to the medical world we depend on. Angioma Alliance has provided amazing video's, pamphlets, letters, educational materials, webinar for all of us to be better together.

If your looking to join our community , the doors are open. We are on Facebook under Northwest Angioma Alliance Community or email us at Building a better today :)
Posts: 1
Joined: Sat May 19, 2018 1:57 am

Re: Northwest Angioma Alliance Community

Postby Elizabeth » Tue Jul 31, 2018 4:30 pm

Wow!! Awesome group...nice organizing!!
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery.
Posts: 1685
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

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