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 nwangioma.com. Building a better today
