You recognize the face and the name from this year’s holiday campaign – college graduate, working on his Master’s degree, funny. But who is Mohammed “Mo” Haider? What’s his story? This month we introduce you to a great guy who has been part of this community (along with his wonderful family!) for some time now. You might have met him at a conference in which case you likely walked away laughing. But you might not know how active Mohammed has been in Duchenne research. He’s participated in trials and understands, from a patient’s perspective, the need for strong biomarkers like we are funding in this year’s appeal. So please take a moment to sit back and meet Mohammed.
First of all, thanks for sharing your story with PPMD for our holiday campaign. Tell us a little bit about yourself. How old are you? Where are you from? Tell us what you are studying.
I am 23 years old. I grew up in Mt. Laurel, New Jersey, a suburb close to Philadelphia. After finishing high school, I attended the University of Pennsylvania, and graduated this past May with a Bachelor of Arts and a Major in both Economics and International Relations. Soon afterward, I began the Master’s in Finance at Villanova University, which I will complete this coming May. I hope to be working by the end of this program.
What else are you into when you’re not studying?
One of my main interests outside of school is music. I am a big fan of classic rock, 80s metal, jazz-rock fusion, and the blues. My favorite TV shows include Law & Order and most other crime shows, and basically anything on Comedy Central, especially the Daily Show and South Park. I am also a big fan of stand-up comedy.
How do you answer people’s questions about Duchenne? What do you think is the biggest challenge as a person with Duchenne?
As a person with Duchenne, I think one of the biggest challenges I face are my own expectations. Since I do not have all the advantages of being an able bodied person, I put more pressure on myself to do everything the best I can. I always push myself very hard. Another challenge that I have learned to overcome is a reluctance to ask people for help. Most people are willing to help, you just have to be vocal and clear about what you need help with. I have rarely felt discriminated against or disrespected by others, and if someone does treat me unfairly, I do not let it bother me. When people ask me about Duchenne, I usually explain that my muscles are missing a structural protein, which results in the gradual breakdown of muscle tissue. My experience with most people is that they rarely ask about my disease or even care, they just treat me as a regular person. Most of the time I do not even think about it, it is just a part of me, like my skin color or eye color.
As you know, this we are funding biomarker projects with our holiday appeal. These projects, we hope, will significantly affect the clinical trial process. Tell us about your experience participating in clinical trials and the outcome measures you dealt with.
I recently participated in the Sildenafil trial at Kennedy Krieger. It lasted for a year and required monthly visits to Kennedy Krieger for the first six months followed by a monthly visit with my local physician. The most difficult part was getting the initial, 6 month, and 1 year cardiac MRI. It was painless, but annoying, to sit in a machine for an hour. Besides the cardiac ejection fraction, the other outcome measures were finger and hand grip strength, and a simple pulmonary function test. Overall, I think it was a positive experience and I would do it again. I feel that the small cost imposed on myself is far outweighed by the potential benefit for so many others, even if it may have no benefit to myself.
Thanks so much for your candor Mo, and good luck with grad school!
Will Nolan, Communications Director
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