Darla’s Message to MS: “To live with fear is a life half-lived”

I met Darla Bongiovanni in September when she was just starting her first year of classes at SUNY-Purchase in New York.  Darla’s not just a undergrad student, she is also musician turned science major who was diagnosed with MS a few years ago. She originally came back to school to get more involved with the fight against MS as a doctor and researcher. Her dream was to become a neurologist specializing in MS.

She found the Myelin Repair Foundation’s website when she was starting to read up more on multiple sclerosis research that specifically pertained to myelin. In her words, this is what intrigued her about the MRF:

“We can’t wait for a cure for MS” was the first thing I saw on the website. I was so happy to see that the MRF had developed this research model with a timeline and goals in hopes of making progress FAST.

Simply put, I want to do, to see, and to feel as much as possible while I still can. MS could very well slow me down, but myelin repair means MS wouldn’t ever stop me.

So, she emailed us regarding getting involved as a volunteer.

I wanted to spread the word. Educating other people about MS is very important. Not enough people out there know how complicated a disease MS can be. More importantly, there’s a need more a newer type of MS awareness. Awareness with a positive spin on it – that there is no cure YET. I feel that this is a time to really make it known that MS may not stay an incurable disease forever, and to let everyone know how far we’ve come and how much closer we are to making that happen. Nothing is impossible.

I gave her a call to talk to her about her interest in MRF and what she’d like to do. She was enthusiastic and driven. Once I told her about our internet strategy and how she could help us in spreading the word online, she immediately took the reins and started creating videos on YouTube at DarlasMyelin Channel.

Every month, she releases a new episode about herself, her life as a student and how she’s coping with school and her MS.

I really enjoy keeping up with Darla’s life. She’s such a beautiful person on the inside and out and you can really see her personality shine through her videos. In her “Message to MS” she sang and played the guitar for this music video. It’s pretty amazing and chilling at the same time. You have to watch it to the very end.

During this past semester her career plans evolved, especially as she got involved with the MRF. Now, she’s planning to go to grad school to research a cure or treatment for MS.  She’s currently in her first year of undergrad so she’s taking basic science courses, and she’s very excited about taking a class in the Spring 2010 that will focus on neuroscience and the brain.

Darla enjoys meeting other MSer’s out there that have watched the vlog and would like to talk with you if you are driven to find a cure like herself. Follow her on Twitter @darlasmyelin. Watch, enjoy and share her video below:

Tags: darla bongiovanni, darlasmyelin, musician, myelin repair foundation, neurologist, pre-med, research model, student, suny purchase, volunteer, YouTube

This entry was posted on Tuesday, December 8th, 2009 at 8:05 am and is filed under Interviews, Stories, Take Action. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.