About us
AVM and aneurysm survivors need our help, and you can be a part of that!
Kendall’s Story
On October 25, 2014, at just 10 years old, Kendall Kemm suffered a stroke, the result of a very large Arteriovenus Malformation (AVM) that ruptured inside her head. Until that time, Kendall and her family had no idea this AVM existed. Along the way, she learned she also has three aneurysms. Thankfully, Kendall is fighting her way back and is currently undergoing radiation treatment with the hope that one day she will be rid of the monster in her brain. Until that time, she remains at risk of another stroke. Meanwhile, Kendall’s misfortune led her to wonder about other kids like her and how she could help them. That’s how Kendall’s Crusade was formed.
In 2016, our first year as a registered non-profit, we raised $125,000 and can proudly say that 100% of the donations have gone to charity, including $75,000 to Stanford University to fund AVM research, as well as establish a patient fund. In addition, we’ve been able to independently help several AVM families in need. Thank you for supporting Kendall and so many others, on this journey.On October 25, 2014, at just 10 years old, Kendall Kemm suffered a stroke, the result of a very large Arteriovenus Malformation (AVM) that ruptured inside her head. Until that time, Kendall and her family had no idea this AVM existed. Along the way, she learned she also has three aneurysms. Thankfully, Kendall is fighting her way back and is currently undergoing radiation treatment with the hope that one day she will be rid of the monster in her brain. Until that time, she remains at risk of another stroke. Meanwhile, Kendall’s misfortune led her to wonder about other kids like her and how she could help them. That’s how Kendall’s Crusade was formed.
Awareness
Arteriovenus Malformations (AVMs) are a defect in the vascular system. AVMs are a tangle of unnecessary blood vessels. The normal flow of blood carries oxygen-rich blood through arteries away from the heart to the rest of the body, then returns oxygen-depleted blood through veins back to the heart and lungs. capillaries connect the arteries and veins allowing the blood to slow and deliver oxygen. The AVM disrupts this flow, causing a tangled web of veins and arteries to connect without the presence of capillaries. The result is higher blood flow through the AVM, which increases pressure on those veins and arteries and can spontaneously rupture.
AVMs can be found anywhere in the body, but are most often found in the brain or spinal cord. AVMs are believed to be congenital, although some recent research has identified possible genetic links, as well as other possible factors in AVM development. Arteriovenus Malformations (AVMs) are a defect in the vascular system. AVMs are a tangle of unnecessary blood vessels. The normal flow of blood carries oxygen-rich blood through arteries away from the heart to the rest of the body, then returns oxygen-depleted blood through veins back to the heart and lungs. capillaries connect the arteries and veins allowing the blood to slow and deliver oxygen. The AVM disrupts this flow, causing a tangled web of veins and arteries to connect without the presence of capillaries. The result is higher blood flow through the AVM, which increases pressure on those veins and arteries and can spontaneously rupture.
AVMs can be found anywhere in the body, but are most often found in the brain or spinal cord. AVMs are believed to be congenital, although some recent research has identified possible genetic links, as well as other possible factors in AVM development. Arteriovenus Malformations (AVMs) are a defect in the vascular system. AVMs are a tangle of unnecessary blood vessels. The normal flow of blood carries oxygen-rich blood through arteries away from the heart to the rest of the body, then returns oxygen-depleted blood through veins back to the heart and lungs. capillaries connect the arteries and veins allowing the blood to slow and deliver oxygen. The AVM disrupts this flow, causing a tangled web of veins and arteries to connect without the presence of capillaries. The result is higher blood flow through the AVM, which increases pressure on those veins and arteries and can spontaneously rupture.
Facts
• An estimated 1 in every 5,000 people has an AVM, although one recent publication suggested that number is closer to 1 in every 2,000.
• Each year, about four in every 100 people with an AVM will experience a hemorrhage.
• Each hemorrhage poses a 15-20 percent risk of death, 30 percent neurological morbidity, and 10 percent mortality.
• AVMs are the second most identifiable cause of brain hemorrhage after cerebral aneurysms, accounting for 10 percent of all cases.
• Approximately 50 percent of patients present initially with a bleed; often patients with an AVM experience no symptoms and their AVMs are discovered only incidentally, usually either during an autopsy or during treatment for an unrelated disorder.
• The annual rate of rupture for brain AVMs is believed to be around 4 percent, however that number goes up when certain factors apply –
– when the brain AVM presents with hemorrhage;
– when it has a deep venous drainage;
– when it is associated with aneurysms; or,
– when it is in a deep location
* (all four factors associated to higher risk of hemorrhage apply to Kendall’s AVM)
There are three means of treating AVMs;
* Surgical removal – which is the ideal method because it results in immediate removal of the AVM, although it’s not always an option, as in Kendall’s case.
* Embolization – typically used in conjunction with other treatment options)
* Stereotactic radiosurgery – using radiation to shrink and hopefully obliterate the AVM. This was Kendall’s only available option.
– facts and information obtained through various sources, primarily from the American Association of Neurological Surgeons (aans.org)•
The Mission
Kendall’s Crusade strives to raise awareness about AVMs and aneurysms while financially supporting research and the families who need help getting treatment.
Raise awareness about AVMs and aneurysms
Few know what AVMs are unless touched by the defect themselves or through someone they know.
While not often seen, AVMs typically find a way to be heard and the results can be catastrophic.
AVMs often present in people between the ages of 20-40. Finding an AVM while in the adolescent years is incredibly rare.
Raise money for Research
There are several accomplished neurosurgeons across the country currently conducting important research to understand more about vein malformations. They need our support to improve treatment plans and even find a cure. There are several accomplished neurosurgeons across the country currently conducting important research to understand more about vein malformations. They need our support to improve treatment plans and even find a cure.
Raise money to support families in need of medical treatment
Doctors who treat AVMs are hard to find and not always easy to get to.
Even if medical expenses are covered, the travel costs can add up quickly making an already stressful time even more stressful.
How can you help?
There are a few different ways you can make a difference through Kendall’s CrusadeThere are a few different ways you can make a difference through Kendall’s Crusade
MAKE A DONATION
Survivors are amazing and often look the same as the rest of us on the outside, but inside they have challenges and through your donations, we can help them overcome the obstacles that go along with having an AVM or aneurysm.
DONATETELL YOUR FRIENDS ABOUT US
In addition to medical treatment, survivors need support and understanding. The only way we can be sensitive to their struggles, particularly the struggles we can’t see, is to try our best to understand what they’re going through. Even if you know just a little bit, a little knowledge can go a long way.
SHAREContact us
If you or someone you care about has an AVM, we’ll gladly share their story. If you’d like to donate or get involved or just let us know you’re out there, whatever the reason, we’d love to hear from you.