In the News
NYU Steinhardt Students of the Occupational Therapy Program Launch a Study with Brave Minds Project to Investigate the Medical and Social Needs for Acquired Brain or Brainstem Injury
Open to 13-30 year-olds and immediate family members to better understand difficulties surrounding community participation and complicated family needs
New York, NY – February 7, 2022- Graduate students of NYU Steinhardt’s Occupational Therapy Program have partnered with Brave Minds Project, a 501(c)(3) dedicated to raising awareness and funds to support patients in their early teens to early adulthood who have been diagnosed with brain and brainstem conditions, to launch a study to understand and assess the needs of individuals aged 13-30 with an acquired brain or brainstem injury and their immediate family members.
Through REDCap, individuals can complete a 30-minute online survey pertaining to the needs of individuals between the ages of 13-30, living with an acquired brain injury and brainstem condition. The survey will explore the emotional, professional and community needs, as well as the level of involvement in healthcare decisions, community participation and social engagement.
“Now more than ever individuals with brain and brainstem conditions, as well as many others living with disabilities, have been faced mental health distress, alienation through lack community engagement, and so much more as a result of the ongoing COVID-19 pandemic,” said Alyssa Carfi, Founder and President of Brave Minds Project. “Working with NYU Steinhardt to identify these challenges will not only help us to better the life experiences of those affected, but also help us allocate resources where needed and better serve the community.”
Understanding those with brain injuries can face social isolation and bullying due to their condition, the survey will look at the frequency of these events in the participants’ lives. With mental health struggles on the rise due to the COVID-19 pandemic, it’s likely there may also create new needs for the individual and their families, which is another factor measured in this study.
Individuals interested in participating in this survey are encouraged to visit the REDCap portal to learn more and sign a consent form. Participation is voluntary: https://openredcap.nyumc.org/apps/redcap/surveys/?s=N78THY9JR.
IRB Approved: IRB-FY2021-5349
About Brave Minds Project:
Brave Minds Project was founded in 2020 by Alyssa Carfi, a brainstem surgery survivor. The 501(c)(3) works to raise awareness and funds to support patients in their early teens to early adulthood who have been diagnosed with brain and brainstem conditions. At Brave Minds Project, we believe this is the Forgotten Demographic, as it is a time when ones’ hormones are changing, their mind is developing, and they’re exploring who they want to become in life, all while navigating life with a brain condition. We see it as our mission to provide support from diagnosis through recovery to these patients and their families. To learn more, please visit: www.bravemindsproject.org
Prose patient, Alyssa Carfi, is inspired to support others through the Brave Minds Project
Alyssa Carfi had a brainstem cavernoma, a condition where blood vessels are clustered together, and in her case, lodged deep in her brainstem. The condition caused bleeding in her brainstem three times: when she was 12, 15, and 18 years old. On the third occurrence, her doctors knew they had to try to remove it before it caused further damage. Just three days after graduating high school, Alyssa went in for surgery.
Charity Matters: Brave Minds Project
This past week I was in the New York visiting friends and getting into the holiday spirit and had the chance to talk to an amazing New Yorker and recent nonprofit founder, Alyssa Carfi. A young dynamo with a public relations career by day and someone determined to make a difference as a new nonprofit founder by night and weekends and every minute in between. I often think that people forget that nonprofit founders are entrepreneurs of the best kind, people who start businesses to serve others. Alyssa is exactly that, she has taken her experience as someone who had a brain condition called, ‘cavernous malformation’ and turned it into a remarkable nonprofit called Brave Minds Project.
Bergen County Magazine
Inspired by her own personal experiences, Alyssa Carfi founded the Brave Minds Project, a nonprofit program intended to provide support systems, form a community and raise awareness for those diagnosed with brain and brain stem conditions.
This past June marked Carfi’s 10-year anniversary of her own brainstem surgery. When she was 15, doctors discovered that she had a cavernoma, also known as a cavernous malformation.
The Download: A Beautiful Brain & Brave Minds
September is National Brain Aneurysm Awareness Month. To honor and celebrate the cause, Alyssa Carfi, an Account Supervisor at Red Havas shares the story of how having a brain aneurysm changed her life. One of those changes involved founding Brave Minds Project, a registered New Jersey nonprofit, and 501(c)(3) that raises money to donate to programs designed to help others living with brain damage. In August, Brave Minds Project held a charity ride at SoulCycle, raising $2,500 that which will be donated to a patient in recovery from brain surgery. You can follow along on Instagram @bravemindsproject.
CBS 2 NY Snapshot NY: Woman Holds Charity Skydiving Event 10 Years After Undergoing Brain Surgery
All About Brave Minds Project {a Non-Profit Helping Patients with Brain Conditions}
Thousands of Americans suffer from brain or brain stem conditions. However, the majority of patients and their loved ones have gone through these painful experiences alone, until now. Brave Minds Project was created to connect those in this community with one another for support while also raising awareness for these conditions. Founder, Alyssa Carfi, knows first-hand what it’s like living with a brain condition and has created a safe space for those who have a brain condition.
Rumson teen with spina bifida uses medical experiences as catalyst
A brave and determined girl who is living with spina bifida requests to view her own medical procedures and remain conscious when entering the operating room because she plans to become a neurosurgeon.
“I’m going to let God take me wherever he wants,” 17-year-old Victoria Caetano said in an interview on April 6.
Spina bifida is a birth defect that occurs when the spine and spinal cord do not form properly. Spina bifida may cause physical and intellectual disabilities that range from mild to severe, according to the Centers for Disease Control and Prevention.
