About ACT
Brain Aneurysm/AVM Community Together Survivor Support Association (ACT) was started on March 4, 2015 as a Facebook support group. It is maintained by Brain Aneurysm and AVM survivors who are passionate about providing support for fellow survivors and caregivers and about increasing awareness of Brain Aneurysms, AVMs and Strokes.
On January 19, 2018 501 (c) (3) status was granted through the Internal Revenue Service (retroactive from 12/13/17) making any donation made 12/13/17 or thereafter tax deductible.
Our Mission as a non-profit is to financially help survivors/caregivers in their recovery or on going treatments with three programs:
Second Look Program: Enables survivors to get second opinions from Quality Medical Centers such as the Barrow Neurological Institute in Phoenix, AZ.
Recovery Relief: Provides a package of essential items and/or services to survivors who are beginning their recoveries at home.
"Jay's Way" (in memory of our friend who lost his battle from an AVM rupture)
Supplies mobility assistance, devices/technology to survivors who have sustained long-term deficits.
So often both survivors and caregivers feel isolated and alone, and may feel rather beat up and knocked around by life in general. Our hope is that ACT will give them a soft place to land, a place for support, information, compassion, and that connection they all need and deserve. The ACT support group is primarily via a Facebook group. The direct link to our group is www.facebook.com/groups/BAAVMCT. You can also click on the Facebook icon at the top of this page.
The Founder's story and inception of ACT:
http://wric.com/2015/09/29/chesterfield-woman-shares-story-for-brain-aneurysm-awareness-month/
http://rrdailyherald.com/news/555/september-is-brain-aneurysm-month/
In January 9, 2014 Sharon Adams was recovering from the flu just as she had returned to her job as Elementary School Secretary at her local Elementary School following the Winter Break. Her son was deployed in Afghanistan at this time as part of Operation "Enduring Freedom". Sharon felt ill and went to lay down. She began coughing and heard a pop in the center of her head. As she described to me it was the worst headache of her life and she thought the back of her head was gone. Unable to move or even call out to her husband Sharon lay there in pain. It is unclear for how long. She finally managed to get up, go to the kitchen an take something for the headache. She was still unable to call out to her husband who was upstairs at the time. When Sharon's husband emerged from upstairs she tried to explain what happened. Her husband (James) wanted to take her to the ER, but Sharon resisted and lay awake all night wondering if she would survive the night. In the morning the pain had lessened some, but Sharon went straight to the ER. A CT Scan was done and it was confirmed that Sharon had a Brain Aneurysm. With her son being in Afghanistan she wasn't even able to reach him to let him know. Sharon was sent by Critical Care Team to another hospital where she met her Neurosurgeon, Dr. John Gaughen. Within 15 minutes Sharon was in surgery. Her surgeon performed an Endovascular Coiling inserting 10 coils. Sharon tried to recover and return to her job at school about five weeks later. On her first day back she suffered a panic attack and was released back into the care of her Neurosurgeon. On February 12, 2014 Sharon suffered a heart attack at home and alone. Irreversible damage was done to the "Apex" part of the heart. Sharon again tried to return to work in March of 2014. She maintained an altered schedule for about six weeks. During Spring Break Sharon totaled her car during a freak accident. At that time her Neurosurgeon and Cardiologist agreed to take Sharon out of work indefinitely. Sharon started experiencing deficits that she could not explain; short term memory loss, depression, extreme fatigue, panic/anxiety, loss of words, confusion. With the full support of Sharon's Neurosurgeon he recommended that she have testing done and it was confirmed that Sharon was suffering from PTSD. Sharon ended up taking early retirement from the school system. With mounting debt and only one income now Sharon and her husband were forced to declare bankruptcy and their house was foreclosed on.
Sharon knew there must be other Brain Aneurysm Survivors who must be facing the same challenges that she was and that she could not be alone. She began searching for groups on line and Facebook. She joined several, but nothing seemed to address or fit what she was looking for so in March 2015 Sharon started her own Facebook group for Survivors/Caregivers of Brain Aneurysms, AVM's (Arteriovenous malformations) and Strokes. It started with just a few hundred members. As of today the membership has reached 5500! In July 2016 Sharon's coils compacted and she had to go back in for another Endovascular Surgery where seven more coils and two stents were added. She will be monitored for the rest of her life. On December 13, 2017 Sharon gained Non-profit status for her group with the sole purpose of raising funds to financially aid survivors in their recovery, obtain second opinions and help with mobility devices for those who have long-term or permanent disabilities. All of the monies expended thus far to obtain the non-profit status, set up a store front, etc.... have all come from Sharon and James' personal funds. Sharon's Non-Profit, Brain Aneurysm/AVM Community Together Survivor Support Association desperately requires funds to get off the ground and running. It is not just something endured by the Survivor. It is not a one time event. It effects the whole family.
On January 19, 2018 501 (c) (3) status was granted through the Internal Revenue Service (retroactive from 12/13/17) making any donation made 12/13/17 or thereafter tax deductible.
Our Mission as a non-profit is to financially help survivors/caregivers in their recovery or on going treatments with three programs:
Second Look Program: Enables survivors to get second opinions from Quality Medical Centers such as the Barrow Neurological Institute in Phoenix, AZ.
Recovery Relief: Provides a package of essential items and/or services to survivors who are beginning their recoveries at home.
"Jay's Way" (in memory of our friend who lost his battle from an AVM rupture)
Supplies mobility assistance, devices/technology to survivors who have sustained long-term deficits.
So often both survivors and caregivers feel isolated and alone, and may feel rather beat up and knocked around by life in general. Our hope is that ACT will give them a soft place to land, a place for support, information, compassion, and that connection they all need and deserve. The ACT support group is primarily via a Facebook group. The direct link to our group is www.facebook.com/groups/BAAVMCT. You can also click on the Facebook icon at the top of this page.
The Founder's story and inception of ACT:
http://wric.com/2015/09/29/chesterfield-woman-shares-story-for-brain-aneurysm-awareness-month/
http://rrdailyherald.com/news/555/september-is-brain-aneurysm-month/
In January 9, 2014 Sharon Adams was recovering from the flu just as she had returned to her job as Elementary School Secretary at her local Elementary School following the Winter Break. Her son was deployed in Afghanistan at this time as part of Operation "Enduring Freedom". Sharon felt ill and went to lay down. She began coughing and heard a pop in the center of her head. As she described to me it was the worst headache of her life and she thought the back of her head was gone. Unable to move or even call out to her husband Sharon lay there in pain. It is unclear for how long. She finally managed to get up, go to the kitchen an take something for the headache. She was still unable to call out to her husband who was upstairs at the time. When Sharon's husband emerged from upstairs she tried to explain what happened. Her husband (James) wanted to take her to the ER, but Sharon resisted and lay awake all night wondering if she would survive the night. In the morning the pain had lessened some, but Sharon went straight to the ER. A CT Scan was done and it was confirmed that Sharon had a Brain Aneurysm. With her son being in Afghanistan she wasn't even able to reach him to let him know. Sharon was sent by Critical Care Team to another hospital where she met her Neurosurgeon, Dr. John Gaughen. Within 15 minutes Sharon was in surgery. Her surgeon performed an Endovascular Coiling inserting 10 coils. Sharon tried to recover and return to her job at school about five weeks later. On her first day back she suffered a panic attack and was released back into the care of her Neurosurgeon. On February 12, 2014 Sharon suffered a heart attack at home and alone. Irreversible damage was done to the "Apex" part of the heart. Sharon again tried to return to work in March of 2014. She maintained an altered schedule for about six weeks. During Spring Break Sharon totaled her car during a freak accident. At that time her Neurosurgeon and Cardiologist agreed to take Sharon out of work indefinitely. Sharon started experiencing deficits that she could not explain; short term memory loss, depression, extreme fatigue, panic/anxiety, loss of words, confusion. With the full support of Sharon's Neurosurgeon he recommended that she have testing done and it was confirmed that Sharon was suffering from PTSD. Sharon ended up taking early retirement from the school system. With mounting debt and only one income now Sharon and her husband were forced to declare bankruptcy and their house was foreclosed on.
Sharon knew there must be other Brain Aneurysm Survivors who must be facing the same challenges that she was and that she could not be alone. She began searching for groups on line and Facebook. She joined several, but nothing seemed to address or fit what she was looking for so in March 2015 Sharon started her own Facebook group for Survivors/Caregivers of Brain Aneurysms, AVM's (Arteriovenous malformations) and Strokes. It started with just a few hundred members. As of today the membership has reached 5500! In July 2016 Sharon's coils compacted and she had to go back in for another Endovascular Surgery where seven more coils and two stents were added. She will be monitored for the rest of her life. On December 13, 2017 Sharon gained Non-profit status for her group with the sole purpose of raising funds to financially aid survivors in their recovery, obtain second opinions and help with mobility devices for those who have long-term or permanent disabilities. All of the monies expended thus far to obtain the non-profit status, set up a store front, etc.... have all come from Sharon and James' personal funds. Sharon's Non-Profit, Brain Aneurysm/AVM Community Together Survivor Support Association desperately requires funds to get off the ground and running. It is not just something endured by the Survivor. It is not a one time event. It effects the whole family.
DISCLAIMER: No information found on this web site should be construed as medical advice. If you or a loved one thinks you may have an aneurysm or AVM, please seek medical attention.
COPYRIGHT: All text and images on this web site are the sole property of the ACT Administrators. Copying any of the images and/or text without permission is strictly prohibited.
COPYRIGHT: All text and images on this web site are the sole property of the ACT Administrators. Copying any of the images and/or text without permission is strictly prohibited.