About the event
The Okeena Park Cavernous Angioma Fundraiser is to raise awareness on the rare disease, Cavernous Angioma that affects every 500-600 people. All proceeds from this event will be donated to the Angioma Alliance, the organization that reserches Cavernous Angioma.
- Other names: Cavernous hemangioma, Cerebal Cavernous Malformation (CCM), or Cavernoma.
- Angiomas are lesions comprised of clusters of abnormally dilated blood vessels. In short, the brains blood vessels form into a raspberry like shape where blood flow is slow and tend to leak and/or ...bleed out due to weak cellular walls. They can form in the brain, spinal cord, skin and retina.
The Angiomas can bleed slowly inside its own walls, while remaining small. However they can also bleed very quickly inside themselves, expanding their size and putting pressure on the surrounding brain tissue. Angiomas can also break, and bleed into the surrounding brain tissue, causing stroke like symptoms.
Sufferers can have a single angiomas or multiple, sizing from microscopic to several inches.
Cavernous Angioma occurs in about 0.2% of the general population, or in 500-600 people. Symptoms of this disease often presents themselves in adults, between ages 20-30, but symptoms in children can occur as well. Symptoms have a 30% chance of developing even if the person has Cavernous Angioma. Cavernous Angioma is often a hereditary disease, with the sufferers child having a 50% chance of also contracting it, though some sporadic forms of Cavernous Angioma have been known to form.
Symptoms of Cavernous Angioma depend on the size and location of the Angioma. But the most common symptoms are: seizures, neurological deficits (weakness in the arms and legs), vision and balance problems, fatigue, memory and attention problems.
Symptoms may also change due to the changing size of the Angioma.
Treatments for Cavernous Angioma include being surgically removed by craniotomy (exposing a part of the brain by removing a piece of the skull) or by radiation surgery. Angiomas on the spine can be surgergically removed as well by laminectony (removing the back part of the vertebra that covers the spinal canal). Risks of these surgeries include stroke, paralysis, coma and death. Though these risks are growing more rare with modern surgery.
For more information please go to www.angiomaalliance.org, this will provide more information over the disease itself, and also over the organization that all proceeds will be donated to.
Why should you sponsor?
Any company that supports this event will have their company logo on the T-shirts that will be worn by the volunteers, and sold to the attenders. Also, the companies logo will be on the flyers that will be posted up in the general area of the town, and at the event itself.
I am Sommer Nowlin and I am hosting the event, for everyone who suffers from this disease, and to raise awareness about this rare and invisible disease. I watched my grandmother be paralyzed from the waste down due to this disease, and I watched as it crippled my mother. I want to do what I can to raise awareness about Cavernous Angioma and to help the researchers do what they can to find a cause, and hopefully a cure!
Contact the Organizer
Contact the Organizer