Meet Rob, an advocate for inclusion

It’s our pleasure to introduce you to Rob Sarles, a member of the iConquerMS Research Inclusion Diversity and Equity (RIDE) Council!  The RIDE Council is working to bridge the gap between awareness and full representation of racial, ethnic, and gender minority groups in research.  Rob holds a deep-seated passion for this effort, which will bring us one step closer to ensuring that all individuals living with MS can receive the best information, outcomes, and care possible. 

Photo of Rob Sarles

Music is my main thing. I’ve directed choirs and performed. Voice is my primary, but I also play piano and trumpet. I’m pretty limited in terms of what I can do musically now, but I have a little studio where I can do limited things. I can still enjoy it, listen to it and go to concerts.

Graphic of Music Notes

Rob is originally from southeast TX and currently lives about an hour north of Nashville, TN.  He is married and has 2 children.  Rob is a musician, through and through.  He studied music in college, earning a Bachelor’s degree in music and a Master’s in music theory and composition.

Rob was diagnosed with MS 10 years ago.  He has been disabled for about 5 years.  He shares, “At this point I’m still relapsing remitting, but possibly secondary progressive MS.  They haven’t given an official upgrade yet.  I started experiencing my first symptoms in 2008.

My hands and feet went numb for a few weeks.  My doctor did all of the MS diagnostics except for a lumbar puncture and didn’t find anything.  About 5 years later I was walking home from work and realized that I didn’t know if I could take another step.  I went to my doctor the next day and he immediately ordered an MRI.  They found some lesions on my spine and admitted me to the hospital.  I spent several days there.  They didn’t give me an official diagnosis when I left the hospital, they waited until my first neurologist appointment to break the news to me… I’ve been on Kesimpta for a little over 2 years now and it seems to be helping some. There are no new lesions.  I’ve still had some disability progression, but at least as far as the MRIs go, it’s been clean.”

Rob MS journey photos

Rob “celebrated” the 10-year anniversary of his MS diagnosis by creating his Instagram, #thatissoMS.  In his words, “I share stories about my experiences with MS, my experiences with the RIDE council, and things that I’ve learned in research news.  I’m excited about it, doing my tiny little part.  It helps to get the word out about the RIDE Council and everything we’ve been doing.  It’s also a creative outlet.”

How did you first hear about ACP?
“I signed up for iConquerMS in 2018, about 5.5 years ago.”

Why do you serve on the RIDE Council?
“Racial equity, inclusiveness and diversity have been really important to me since I was a child.  I’ve always valued them and fought for them.  I wanted a chance to be a part of something like that.”

What about ACP’s mission inspires you the most?
“I really like the cooperation between the patient and research.  That it’s intertwined.  It’s all about communication.  I think that really will accelerate research and progress toward a cure.”

What gifts and skills do you bring to the RIDE Council?
“I’m a very curious person.  I’m constantly trying to learn.  I am creative.  I like to think outside the box.  I’m empathetic not just to my own personal needs and causes, but also to other people.  And I’m not afraid to stand up for the needs of other people as well.”

The RIDE Council Logo
Embracing diversity in MS research benefits the entire MS population. The RIDE Council advocates for inclusive research, which could lead to improved healthcare and quality of life for all those affected by MS.  Want to be a part of this exciting movement?  Join iConquerMS to find out how you can contribute to making MS research more inclusive! 

“Even though I am quite limited in what I am able to do, I still want to do what little I can to make a difference.  Whether it’s advocating for people with MS who are underrepresented or discriminated against, or participating in research personally (but, unfortunately, people at my disability level often don’t qualify for studies).  This also applies to finding ways of doing the things I enjoy like music or travel, even though I have had to make a lot of adjustments.”  

iConquerMS info-graphic about joining the network