When doctors diagnosed Tim Revell’s sons with Duchenne muscular dystrophy (Timothy, at age two, Andrew at five), they didn’t give the Austin dad much hope. The rare disease, which affects one in 3,500 boys, is 100% fatal
However, Revell and his family refused to give up hope. He and his wife Laura rolled up their sleeves and began researching the insidious rare disease and looked for organizations and resources that they could connect with.
The Revells soon connected with CureDuchenne, a national nonprofit that pursues solutions for DMD patients and their families in a number of ways, including efforts to raise awareness of the deadly condition, and funding research for the pursuit of potential treatments and, hopefully, a cure.
To support CureDuchenne’s rare disease research, Revell (an avid runner) will lace up his shoes and run the Austin Marathon on April 25. Technically his 16th race, COVID-19 has altered the racecourse somewhat—organizers have changed the 26.2-mile event to a half marathon and 5K; still, he expects to break the $200,000 USD donation mark with his run.
Revell took a break from training and spending time with his family to talk to Outsourcing-Pharma about his family’s experience with DMD, and why rare disease research is a race well worth running.
OSP: Could you please think back to when your sons, Timothy and Andrew, were diagnosed—how did that rare disease diagnosis impact your family?
TR: We were devastated to learn our child had a disease that had no cure and no hope for survival. The news rocked us to the core and defined what our new reality would look like.
All our dreams and hopes for a future for our child turned into a sudden race for survival. We found ourselves in disbelief and bewilderment, just getting out of bed was a chore some days. After mourning for a while, it became time to get to work and do something about our situation!
OSP: How much did you know about MD in general, and in specific about DMD?
TR: We knew nothing MD or Duchenne specifically. In fact, once we figured out what the disease was, we thought the research and treatments were much further along.
As it turns out, little progress had indeed been made toward finding a cure. Soon after Timothy’s diagnosis, we connected with Debra and Paul Miller; they had just founded CureDuchenne because of the lack of treatments for their son Hawken. The organization helped us understand the research landscape and where we wanted to focus.
OSP: I understand your doctors didn’t offer a ton of help/guidance outside of “going home and loving your kids because there isn’t anything we can do.” Could you please share what sorts of resources you encountered that did give you some comfort, info, or other kinds of help?
TR: The local doctor told us to travel to another city to talk with a specialist because he didn’t know what to do for us locally. Soon afterward, we visited with the recommended doctor and learned they too didn’t have much protocol for helping families like us.
It offered us no hope, so we turned to the Internet, which was still fairly new. It was there we found a specialist named Dr. Brenda Wong, we learned she was treating boys with Duchenne and we knew we needed to visit her in Cincinnati ASAP.
The other thing we found was an organization stating they wanted to fund research to find a cure to this terrible disease. It was then we started our journey with CureDuchenne which ultimately gave us an outlet to raise money and fund research to hopefully find a cure.
OSP: Have you and your family had any contact with clinical trials?
TR: Both of our sons have participated in two separate clinical trials of their own. Each has been operated out of town and each has failed.
The world of drug development requires a time and life commitment for each participant. It isn’t easy and requires the willingness to accept that the treatments could fail.
For example, Andrew participated in a trial that lasted two years, it required us to travel once a month to Cincinnati, Ohio for two days where he received treatment and they had him undergo different physical ability tests. The travel was grueling and ultimately the drug failed. It was disappointing, but at least he helped participate in a possible treatment if it had worked.
OSP: One of the earliest conversations I had with a rare disease advocate, they said (I’m paraphrasing) “A rare disease diagnosis can turn parents into warriors.” Does that describe your experience at all?
TR: Somewhat; I was already a warrior and motivated to make a difference in my life. This stemmed from my Christian beliefs and desire to help my fellow man. Duchenne just helped my wife and I narrow in our efforts and willingness to never take no for an answer.
I studied communications in college and I believe it has allowed me to use my gifts to help be a spokesperson for all these boys and young men who need a cure!
OSP: Congratulations on potentially hitting the $200K personal donation mark at this year’s Austin Marathon— that’s pretty incredible. Could you please talk about why the effort to raise funds for and awareness of DMD is important?
TR: The fundraising is the fuel for the engine. You can’t find a cure unless you raise awareness and running the Austin Marathon 16 years in a row has given me a platform to do just that.
We have told the story through news outlets and media through the years and the response has been incredible. In a nutshell, a basic clinical trial costs $1M to fund the groundwork just to get it to a point where they can prove concept and launch into a real study. It isn’t cheap; therefore, we have always felt like the next dollar could be the dollar that finds the cure.
We have never let up in our desire to raise the money to continue the important research which will lead to us curing Duchenne. Personally, our family has now raised over $4M for this incredible calling, and it is all because of the hearts of people who believe saving children is worth every penny of their donation.
Again, it isn’t about the dollar amount; it is about the last dollar which finds the cure. We aren’t there yet, hence our fundraising continues.
OSP: What would you like to tell any patients or parents dealing with a new diagnosis of DMD or another rare condition?
TR: You need to know you are not alone. Advocacy organizations like CureDuchenne can connect you with other families for support and resources.
Most importantly, hope is an inside job. No one can give you hope; it is found inside and today there are more advancements in research and potential drugs that can save these boys.
When we started 15 years ago, there were zero trials and no treatments approved for boys with Duchenne. Fast forward and there are more than 30 trials and several treatments now available for some boys with the disease. It is this kind of momentum which is needed to fix any rare disease.
Momentum starts with one step, which develops into two steps, and before you know it, you have run a marathon. This is a long journey, it is tiring and requires an undying love for your child. Every day they wake up is the hope you find inside to continue fighting for them and all children who need a champion to be their warrior!