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.
Charity Matters: Tell us a little about what The Brave Minds Project does?
Alyssa Carfi: We are a 501c3 that focuses on supporting patients between the ages of 10-29 with brain and brain stem conditions. They are the forgotten demographic, it’s a time when your hormones are changing, your life is changing and you are trying to figure out who you want to be, trying to go to school, or launch your career and then when you find out that there is something wrong with your brains, it’s devastating. It completely changes your whole life and affects the people around you as well.
I was 15 when I was diagnosed and 18 when I had brain surgery. When I look back at what I had there were certain resources missing. I was very fortunate to have both a great support system and great doctors but I wanted to provide some of those resources. I remember my 15th birthday, I was in the hospital and a clown came in and gave me a teddy bear, while it sounds funny it wasn’t really age-appropriate. So what we do besides building a community of young people with brain and brain stem conditions, we have created a mentorship program to pair up a patient with someone in the outside workforce, so if they want to be a doctor or a teacher or an actress we pair them with a mentor in that field so they have someone to look up too. In addition, we provide things such as courage kits which are care packages for our patients and their siblings which is a fun way we can bring them a little sunshine and a smile.
Charity Matters: What was the moment you knew you needed to act and start Brave Minds Project?
Alyssa Carfi: Last November, the day before Thanksgiving I told my parents that I wanted to start Brave Minds Project I am ten years out of my own brain surgery and am still affected by it. Being an adult, I wanted to give back because not everyone is as fortunate as I have been. I’ve been able to go to college, to study abroad, to work and now as I navigate my own place in the world, I knew I had to do this. So, I told my parents I wanted to start a nonprofit and they agreed it was a great idea. So I applied and this past June we got our 501c3. We are just getting started.
Charity Matters: What are your biggest challenges?
Alyssa Carfi: Because of my day job in PR, getting the word out has been pretty easy but the big challenge is that our patients are everywhere and we have to be wherever our patients are so the logistics can be difficult. We continue to partner with more hospitals and build momentum and we would love to be nationwide eventually. It is one step at a time but I honestly didn’t even think we would be this far in our first year.
Charity Matters: What fuels you to keep doing this work?
Alyssa Carfi: It is a lot but it is also very rewarding to hear the patient’s stories and they are inspired that I went through the same thing. We had one patient who was 24 and a year out of brain surgery. I talked to him and told him how incredible he looked for being only a year out of surgery. I told him that I waited for ten years until I met someone else who had even gone through what I had. He was so excited to just have an honest reference point for how he was supposed to look. The work is hard but it is truly rewarding to connect people going through this. Now that same 24 year old is sharing his story to help others as a Brave Minds Project Ambassador.
Charity Matters: When do you know you have made a difference?
Alyssa Carfi: It is those moments when we support our patients which means so much. We had a patient recently that is 19 years old college student with a brain tumor that affects her vision. She needed a very special and expensive contact lens. The Brave Minds volunteers surprised her with this special lens so that she could see. She was beyond grateful, those are the moments that remind me that we are making a difference.
Charity Matters: Tell us what success and impact you have had?
Alyssa Carfi: The biggest impact so far has been the patients that we have helped and their patients. Overall, the connection we have created by bringing people together within this community is something you can’t put a number on. We connect patients to other patients and have incredible events at The Brain Bar, in patrnership with Stroke of Genius, where we bring in speakers such as well known neurosurgeons to talk about various topics, like combining yoga and brain surgery and why its best for recovery. Friends and family of patients have also met and created another level of support.
Charity Matters: If you could dream any dream for your organization, what would that be?
Alyssa Carfi: As we come upon our one year anniversary of the Brave Minds Project, my dream would be to raise more funds to put resources into building more programs. I want to continue to foster our community along with our programs. We have so many great things in place and I am really excited about where we are heading in trying to help this demographic of patients along with the hospitals and institutions. I think that we are bringing people together that can really help to move the needle.
Charity Matters: What life lessons have you learned from this experience?
Alyssa Carfi: I always knew I was going to do something based on what happened to me. I know I was put on this earth for a larger purpose and this experience has taught me that anything is possible. I work really hard to make this happen and I work really hard at my job. All the funds raised by the nonprofit go right back into the organization. I have gotten very good at focusing and compartmentalizing to get things done. The Brave Minds Project has reminded me that people always want to help and I am always amazed by the gifts of time and effort put into showing up and supporting this work.
Charity Matters: How has this journey changed you?
Alyssa Carfi: I have grown as a person. This has been really freeing because not everyone knew my story. I wear my story every day I have 6th and 7th nerve palsy which is where your eye and smile are affected. As a result, I have had a lot of cosmetic surgery and it is definitely better. Starting the Brave Minds Project has forced me to be vulnerable and to open up and say, “Yeah I had this, this is what happened to me and because of this I now run a nonprofit to help others like me.” People no longer see my limitations anymore but the whole picture of what happened to me and how I was able to turn it into something good and that fuels everything that I am doing right now.
YOUR REFERRAL IS THE GREATEST COMPLIMENT, IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.
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