Eliminate the stigma — Individuals with Duchenne muscular dystrophy are often defined by the things they cannot do, rather than their passions, intelligence, dreams and hobbies. Within the Duchenne community, a goal of mine is to try and help others shift their mindset to focus on their abilities rather than their disabilities. If we can accomplish this, and begin shifting the societal stigma surrounding disabilities, we would have a more enriched society. Individuals with Duchenne can (and have every right to) have meaningful and purposeful lives.
As part of my series about young people who are making an important social impact”, I had the pleasure of interviewing Tiffany Cook.
Since Tiffany’s son Wil was four years old, he always seemed to be sitting down while the other kids were running around. Three years later, he received a life-altering answer: he was diagnosed with a devastating rare genetic disease called Duchenne muscular dystrophy.
As Duchenne is inherited from the patient’s mother in about two thirds of the cases, Tiffany learned she carried the gene and as a result was diagnosed with a condition called cardiomyopathy. She now takes the same heart medication as her son. Tiffany found a way to help others and raise awareness for Duchenne by joining CureDuchenne, a nonprofit that aims to connect families with children and young adults living with Duchenne to resources and support. Tiffany now serves as the Senior Director of CureDuchenne Cares.
Thank you so much for doing this with us! Before we dig in, our readers would like to get to know you a bit. Can you tell us a bit how you grew up?
Myname is Tiffany Cook and I grew up in New Orleans, Louisiana as an only child with my parents — now dubbed as Pops and Mimi — alongside cousins who were just like siblings. I graduated from the Academy of the Sacred Heart (’90) and the University of Alabama (’94) — Roll Tide!
Inspired by my cousin’s struggle with dyslexia, I knew that going into college I wanted to pursue a career in Speech-Language Pathology. After graduation, I relocated to South Florida with my now husband, Brian, began grad school at Nova Southeastern University (’97) and my first job as a therapist in Broward County Schools. My career path led me into specializing in Autism Spectrum Disorders. I became passionate about fostering skills of independence in children and ensuring stability in overall social and emotional well-being. My husband’s career led us to relocate to Southern California and subsequently to Texas. I have been fortunate to have met so many wonderful families on our journey.
Following 25 years in the school setting, I shifted my career to focus primarily on Duchenne muscular dystrophy, a condition that personally affects me as a carrier and my son, Wil. I currently live in Dallas, Texas with my husband, Brian, and our two children, Wil (20) and Emily (17).
You are currently working at a social impact organization. Can you tell us a bit about what you and your organization are trying to change in our world today?
CureDuchenne stands on three pillars: cure, care and community. We are committed to curing Duchenne muscular dystrophy by investing in promising science and supporting research initiatives using a venture philanthropy model. We will not stop until a cure is found for every individual affected by Duchenne.
While a cure is always top of mind, we also recognize there are thousands of families living with Duchenne every single day who need access to care, resources and support.
Duchenne has been known to be isolating for those affected, including their families. We are determined to change this by engaging with the community in positive, meaningful ways. We strive to be available for families in their times of need — to be their support system, to connect them to resources and to be with them on our path to cure Duchenne. We also engage with physicians, scientists, physical therapists, pharmaceutical representatives, etc. — all who are giving their time and professional energy to our children and their families.
Upon reflecting on my family’s journey with Duchenne, a three-part webinar series entitled, “Embrace This Moment” was created. It has been our focus to assist families in finding the silver linings. From Beginning the Journey to Growth and Transformation to Spreading Wisdom, each component of this series is connected to the various stages of Duchenne along with the transformation of a mindset which I strive to live by every day — embracing every single moment.
As a Speech-Language Pathologist and a mom of a son with Duchenne, my primary focus has been on social-emotional well-being. Fostering independence and giving children the tools to advocate for themselves is so important. As Duchenne began to take away Wil’s physical strengths, it was gaming that provided him the outlet for his competitive drive. Seeing him excel in the world of gaming has been a reinforcement that his social-emotional well-being is intact and thriving. I have also been witnessing this by other young men with Duchenne. With this observation, CureDuchenne wanted to develop a platform to offer opportunities for young men with Duchenne to utilize their skills in gaming to engage with the community. In collaboration with PTC Therapeutics, we have enlisted five young men with Duchenne — the Panelists — to create a channel on Twitch.TV called Duchenne United Gaming™ aka DUG. These avid gamers have guided the development of DUG, ensuring that all gamers have a “safe space” to connect, compete and have fun. There is something special about a place where everyone can game with others who “get it.” These guys may have Duchenne, but Duchenne does not define them.
Can you tell us the backstory about what inspired you to originally feel passionate about this cause?
There wasn’t really an option not to feel passionate about curing Duchenne muscular dystrophy — my son has it. Wil’s diagnosis came as a shock in 2007 when he was seven years old. He was a “toe-walker,” and as a professional in the therapy world, I did not immediately assume anything major. It wasn’t until some gastrointestinal issues began and a specialist ordered a series of blood labs that I started to feel concerned. One of the tests resulted in a significantly elevated creatine kinase (CK) level. This was the red flag that led us to a neurologist for additional assessment and DNA testing. Within a few months, he was diagnosed with Duchenne.
As a Speech-Language Pathologist, I always had a passion for working with children and families in the special needs community, and now, by no choice of my own, I was a personal member. As Wil grew up, I transitioned out of the school setting and into the Duchenne community, where I thought my skills as both a therapist and mom could help others navigating this diagnosis. Now, in my current role at CureDuchenne, I can provide care for my son at home and help other families navigating Duchenne.
Wil is a genuine, down-to-earth young man who strives to live his life to its fullest and roll with the changes Duchenne brings his way. Wil does not allow Duchenne to define him or our family. His outlook and ability to remain positive continues to fuel my passion daily. We have grown into being a family who lives with Duchenne, but have not allowed it to define us.
Many of us have ideas, dreams, and passions, but never manifest it. They don’t get up and just do it. But you did. Was there an “Aha Moment” that made you decide that you were actually going to step up and do it? What was that final trigger?
I did have an “Aha Moment,” but I don’t think I realized it until sometime later.
In 2010, prior to joining the CureDuchenne team, my family befriended the Millers (Paul & Debra — Founders of CureDuchenne) as we both lived in Southern California and had sons around the same age with Duchenne. Fast forward to 2017, my family had relocated to Dallas and as it happened, the CureDuchenne Cares team was bringing a Family Workshop to town. Debra reached out to me and invited me to share insight on navigating school from a professional viewpoint, as well as my family story.
I had to think about it for a while as this was the first time I would be presenting about Duchenne outside of school-based presentations for Wil’s classmates, teachers, after-school staff, etc. This time, I would be talking about this with other families living with Duchenne. Honestly, I was a bit nervous, but something inside drove me to accept the invitation.
The presentation included a compilation of photos of my family and an overview about the “balancing act” of managing the multi-faceted needs for a family affected by Duchenne — academics, behavior, communication, emotional, physical and social. I also highlighted our family’s focus on positivity and the importance of “living in the moment.” Throughout the presentation, my comfort level increased, and my message began to feel clearer. All the while, I was drawn to a mom sitting in the front row who was teary-eyed and overwhelmed — that look in her eyes was very familiar.
When the workshop ended, that same mom approached me with her two young children in hand and I instantly saw my Wil and Emily from those many years ago. It was a total flashback for me and a flash forward for her. It was in that very moment that I felt a purpose for my being there, for my accepting Debra’s invitation to speak. That reason that drew me to say “yes” was clear. I needed to be there for this mom whose son had just been diagnosed as much as I needed to be there for me, to allow me to be vulnerable and to continue finding the silver linings.
It is my belief that if it weren’t for my “Aha Moment” in Dallas, I would not have had the confidence to dive into this work. I realized that being vulnerable is the key to helping others, and if my experience could empower other families to find their silver linings, I knew it would be worth it for me.
Can you share the most interesting story that happened to you since you joined your company or organization?
In preparing for the CureDuchenne 2019 FUTURES national conference, we knew we wanted to enhance the e-Gaming lounge for the guys to hang out while their parents attended the seminars. While most of the younger boys can use regular gaming controllers, we wanted to make sure that everyone was included, especially the individuals with Duchenne who had progressed further and needed adaptive gaming devices. Through a family friend connection with Steve Gleason, the former New Orleans Saints player diagnosed with ALS, and his organization, Team Gleason, I was introduced to the Microsoft Enable Lab team in Redmond, WA. This team created Eyes First technology for people with limited mobility to be able to control devices using only their eye gaze.
Following introduction, I — along with one of our physical therapists at CureDuchenne and a local Seattle mom and her young son with Duchenne — were invited to visit the lab. To be at the Microsoft campus on behalf of the Duchenne community was surreal. We were able to share our stories with the team, spread awareness about Duchenne and learn about the many ways Microsoft is working to enhance access for individuals to the environment.
The following month, the Enable team attended the FUTURES conference, bringing Eyes First technology gaming sets for everyone to enjoy. They even gave away multiple sets to several attendees.
That experience was so meaningful to me and the whole Duchenne community — we had been noticed by Microsoft! Today, we continue to build on our relationship with Microsoft and Team Gleason, great allies of ours, and look forward to seeing their technology adapt and grow at the Enable Lab.
None of us can be successful without some help along the way. Did you have mentors or cheerleaders who helped you to succeed? Can you tell us a story about their influence?
There are many cheerleaders I have had along the way who have and continue to help me succeed. I believe that it is through these individuals that I receive the fuel to keep moving forward. I also really value teamwork and collaboration because it is essential to consider things from a variety of perspectives.
The stories of my cheerleaders, teammates, friends, other families and mentors have been woven into my story and as a result have carried me to where I am today and where I hope to be tomorrow. Success is not measured by what I have done, but rather by what is felt by those who we have connected with — those who have listened and have been moved to change their mindset. We all help each other to focus on the things in our control and live in the moment.
I began using #FamilyStrong to represent this connection and this community of people who are on the journey for more than the first five minutes of meeting. This group’s stories — entangled with my own — are what influence me to continue to search for the silver livings and embrace every moment. There are those people who you don’t speak with for years and get together and pick up where you left off and there are those whom you meet and instantly feel that connection. Success, to me, is seeing others use #FamilyStrong because they identify with it — it becomes something that isn’t about me, but about them. It’s an anonymous wink that reminds me we’re on the journey together and together, we WIL cure Duchenne.
Can you tell us a story about a particular individual who was impacted or helped by your cause?
Something that really resonates with me is when I can help an individual shift their mindset and focus on the positives in their situation. Recently, after a presentation I gave during our “Embrace This Moment” webinar series, a grandmother reached out to me with this note, and it meant the world to me:
“I want to thank you for the positive approach that you take on all communications!! Our family has some negativity going but you are my source of positivity that is bringing me back to a better place. I am getting stronger in blocking the negative and striving for only the positive!!”
Witnessing the impact of my small interaction with families like this gives me the courage and strength to continue to spread positivity and hope.
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
The root of the problem we are trying to solve is both the disease itself, Duchenne muscular dystrophy, and the stigma surrounding it. Three things the community/society/politicians can do to help, in my opinion, are:
- Listen — Although Duchenne is a rare disease, we are a big, tight-knit community who are fiercely dedicated to finding a cure. By listening to the individuals with Duchenne, the families, advocates and the doctors and scientists who have become experts in the field, you will quickly realize that while there is a lot of hope for the future, there are many problems to be solved. Every family has different needs, whether it be access to care, limited treatment options, the inability to obtain proper equipment, etc. Listen to the families, ask questions about their obstacles and expectations, and be a part of the solution by being an advocate, a donor or a friend to the community. To quote my son, Wil, “be there for more than the first five minutes.”
- Donate — Simply put, to move science forward, we first need to fund the research. Donations of any size made to CureDuchenne directly impacts the trajectory of the clinical pipeline, as well as the ability for us to continue to provide education, resources and support to the community. Since Duchenne is considered a rare disease, affecting 15,000 boys in the U.S. and 300,000 worldwide, it is often overlooked by those not personally affected. It is up to the community of families — who already have a huge financial weight on their shoulders — to raise most of the money to fuel research. If we can push beyond our community and recruit the support of those who take a moment to listen, we will reach the finish line much, much faster.
- Eliminate the stigma — Individuals with Duchenne muscular dystrophy are often defined by the things they cannot do, rather than their passions, intelligence, dreams and hobbies. Within the Duchenne community, a goal of mine is to try and help others shift their mindset to focus on their abilities rather than their disabilities. If we can accomplish this, and begin shifting the societal stigma surrounding disabilities, we would have a more enriched society. Individuals with Duchenne can (and have every right to) have meaningful and purposeful lives.
If you could tell other young people one thing about why they should consider making a positive impact on our environment or society, like you, what would you tell them?
Young people should consider making a positive impact on our society because, in my opinion, it is basic human kindness and love for others that is the key to finding happiness. What you get back when you give a moment of peace or joy to someone else is the most profound peace and joy for yourself.
Is there a person in the world, or in the US with whom you would like to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. 🙂
If I were awarded the opportunity to have a meal with anyone in the world, I would choose a person with character — someone who could assist me and the Duchenne community in building awareness for this disease, someone who could help us reach the finish line in curing Duchenne, someone who could help Wil.
For me, embracing every moment I have with my beautiful children and enjoying daily family meals is greater than anything in the world. Since Wil was diagnosed, the clock has been ticking and now at 20 years old, the clock is ticking at rapid speed so any chance I get to have a meal with him is a blessing.
How can our readers follow you online?
This was very meaningful, thank you so much. We wish you only continued success on your great work!