Happy spring, readers! Matrix sat down to talk with Albert Almada and Sharif Bordbar, postdocs in HSCI Principal Faculty member Amy Wager’s lab, about “Strength, Science, and Stories of Inspiration,” an event organized to raise awareness about degenerative muscular diseases and bring together scientists, patients, and pharmaceutical and biotech companies. In the lab, their work focuses on gene-editing technologies and muscle stem cell regeneration.
by Irina Cashen
Matrix: So how did this event come about?
Albert: Eric Wang, Sharif, and I met in graduate school, and came to realize that we each had family members who suffered from various types of muscular dystrophy — and we soon realized that our common life experiences growing up inspired us to become scientists. Then we thought maybe we should share our stories and try to organize all the muscle disease community so that we could work together to find new therapies to treat these devastating disorders.
Sharif: Our first event was in 2013, and over the last three years it’s evolved to have three specific goals: First, we want to increase awareness about these genetic diseases, and how they affect patients’ lives and their families; second, we want to bring together all local stakeholders of the neuromuscular disease community, including academic scientists, biotechnology and pharmaceutical companies, venture capitals, patients and patient support groups together and facilitate open communication and collaboration; third, we want to inspire the next generation of scientists to join this fight. There are many brilliant scientists around the country, who haven’t decided what they want to do with their career yet. We want to inspire them with stories from patients and family members to consider genetic muscle diseases as big problems, which can benefit from their talent and expertise.
To recruit bright young scientists to join muscle disease research, we’re fundraising to start a fellowship this year in partnership with Muscular Dystrophy Association. The fellowship will support professional development and the resources for one or two promising young scientists who are looking to transform the landscape of muscle disease research, but can’t necessarily get the support for their experiments through other funding sources.
Albert: This fellowship is unique because there are few opportunities for muscle disease researchers to apply for high-risk, high reward project grants that encourage out-side-the-box thinking. We want to really push this because we think it will encourage transformative and not incremental research at the bench. Our co-sponsors and co-administrators of this award, the Muscular Dystrophy Association (MDA), will match up to 20 thousand dollars in funds that we raise for this award, so we are now reaching out to local biotech/pharma and venture capitalists and have even started a GoFundMe campaign to encourage friends, family, and other colleagues to play a role in this cause.
Matrix: How has your event changed/stayed the same since it started three years ago?
Albert: Strength, Science and Stories of Inspiration was founded on and will always focus on sharing “stories” from those brave individuals who live with these devastating muscle diseases each and every day. We have been inspired and encouraged by meeting these people, and some of them even join our team and play crucial roles in event planning and fundraising.
We have been pleased to see that the turn-out for our events and the reach that we have continues to increase every year. This year we have two fantastic speakers Tayjus Surumpudi, a Harvard undergraduate living with Duchenne Muscular Dystrophy (DMD) and Shane Burcaw, an inspirational speaker and accomplished writer living with Spinal Muscular Atrophy (SMA) who both will be sharing stories at our event, followed by a comedy show performed by renowned comedian Max Amini, who’s father recently passed from Amyotrophic Lateral Sclerosis (ALS).
Matrix: Well, thank you very much for telling us about your event. It sounds like a very special evening! Is there a take home message you’d like to leave our readers with?
Sharif: The take-home message that I’d like to deliver is we believe moving towards effective therapies requires effective communication between not only between the scientists in the lab, but also between the academics and business leaders. That communication is required to build a bridge between findings in the lab and the clinic. We feel like there’s lack of communication in that area for neuromuscular diseases right now, and we’d like to change that.
For more information please check out the “Strength, Science, and Stories of Inspiration” event website at: http://strengthscienceandinspiration.com/