Volunteer Spotlight: Brandi Hurtubise
Tell us about your professional/educational background.
I graduated from Buffalo State College with a Bachelor's Degree in Political Science in 2010. From there, I went on to work for GEICO Insurance Company for 8 years before my family and I decided it was best that I stay home to care full-time for my CMV daughter Samantha.
What makes the National CMV Foundation's mission powerful for you?
My daughter Samantha is my second born child and severely affected by cCMV. I didn't know about CMV before I had Sam. I didn't know there were steps I could have taken to try and prevent being infected with CMV during my pregnancy. I received a lot of wrong information from medical providers initially and as a parent of a sick baby this was incredibly disheartening and still angers me to this day. My daughter is amazing and I'm so grateful for her, but I don't want families to continue to suffer and not have all the facts about CMV that they should have and are entitled to.
What made you decide to get more involved with the National CMV Foundation, as a Community Alliance Chair?
The first few years of Sam's life were very difficult and kept me very busy. Life seems to be in a good place now and it's time I do something for myself and for my daughter. I've had a passion for educating family and friends about CMV since Sam was young and now I feel I can expand on that. I also feel very at home and comfortable with other CMV moms. I have met a lot on this journey and I look forward to meeting more.
In your role as CMV Community Alliance Chair, what goals have you set for 2021?
I am planning a tee shirt fundraiser for the CMV Foundation that I'm very excited about. Everyone loves a powerful message on something they can wear! I would also love to host a 5K when we see some warmer weather in the Spring.
What does success look like to you?
I am forever attached to this new world. The world of raising a child with a disability. I plan to always work in this world that I have joined. As we get ready to send our daughter to school for the first time, I'm hoping to become an aid in a special needs classroom to work directly with my daughter. I plan to always work and be apart of the disability community. A lot of that will be working with my own daughter, but I hope to work with and help other disabled children and their families.
What motivates you?
My daughter and my family. Sam inspires everyone that meets her. She has an incredible smile that's contagious and makes it impossible to have a bad day. My husband, my son, Sam and myself make an amazing team. I want to do well for them, to make them proud of me, to always be a good wife and mother, and to also be an advocate and an educator for the disabled and CMV community.
As a volunteer leader, what advice do you have for people who want to work on CMV advocacy, but don’t know where to start?
Just jump in!!! I've been sharing to social media since my daughter was about 17 months old. Just information about CMV and the impact it has had on her life. People respond. You build a community. It's so therapeutic. I don't always know what I'm doing, but trying is better than not doing anything at all. I've been told by friends that I haven't spoken to since high school that they talked to their doctor about CMV because of something I shared on Facebook. That makes me feel good. I know I'm reaching people.
'Life is tough Darling, but so are you'
What do you like most about living in Buffalo?
You mean besides the BUFFALO BILLS???!!!! We really are the City of Good Neighbors and I wouldn't change experiencing 4 seasons every year for anything. GO BILLS!!!!
You're happiest when?
I'm at home with my husband, our 2 children and our cat and dog.
When everyone is healthy, happy, and in comfy clothes relaxing and laughing.
Category: Advocacy, Awareness, Community, Parent, "Parent Perspective", Perspective