On February 28, 2023, Jett Foundation hosted their annual Rare Disease Day event, Thriving with Duchenne, with a presentation and panel discussion focused on anxiety and mental health in Duchenne muscular dystrophy. 2023 marked Jett Foundation’s 6th year celebrating Rare Disease Day. This year’s event welcomed nearly 300 attendees via a Zoom webinar and Facebook Live stream.
Moderated by Kyle Bryant and Sean Baumstark, hosts of the Two Disabled Dudes Podcast, this year’s event featured six panelists who shared their experiences managing mental health and anxiety, as well as thriving through the challenges it brings while facing a rare disease as an individual, family member, or professional.
Dr. Albert Freedman kicked off the event with his point of view as a family psychologist and father to a son who lived with Spinal Muscular Atrophy for 26 years. “The detail and vigilance required to care for someone with a rare disease takes an extraordinary amount of energy. I helped myself be less anxious by staying on top of things.”
He also shares, “Taking a break from anxiety requires focus on things outside of a rare disease: relationships, hobbies, work, friendships. We must take care of ourselves.”
Jett Foundation prioritized having panelists that come from all areas of the rare disease space, including three individuals who live with Duchenne.
“The greatest cause of anxiety, for me, is not knowing what the future holds,” says Cal Quitzau, a 21-year-old who lives with Duchenne who spoke on our panel. “If we let Duchenne or our rare disease define us, who is winning? Us or the disease? Duchenne won’t have the last laugh, I will.”
Dr. Ryan Russell, who also lives with Duchenne and spoke on our panel, shared his experience of obtaining a Ph.D. while living with a rare disease: “I needed to have some stubbornness,” he says. “I can do most things through my computer these days, which is a source of freedom. But I added anxiety onto the situation by being determined to get my degree without help. I realized it’s important to recognize I have additional needs compared to others, and it’s okay to accept help.”
Joining us from Israel on Rare Disease Day was Gavriel Rosenfeld, an individual impacted by Duchenne. “On a day that I was feeling particularly low about six months ago, I came across a part of the Wim Hof Method that involves swimming in cold water. I started waiting until nightfall when the pool would turn to 3 or 4 degrees (celsius) and allow the cold water to relieve my anxiety and provide a distraction. I try to do that on a daily basis now,” says Gav.
Luke Hains is a sibling and home health aid to a loved one impacted by Duchenne. He shares, “At the end of the day, I’ll always be [Levi’s] brother before his home health aid. We fight like brothers and have our challenges like any siblings would. I’m happy I can help my family while also pursuing my own career goals and helping Levi pursue his.”
Amanda McConathy has connected with Jett Foundation through Family Workshops, Jett Giving Fund, support groups, and now as a Rare Disease Day panelist. As a mother and sibling to individuals impacted by Duchenne, Amanda shares: “I try to take each day as its own and not let the small things create larger problems. Before receiving our accessible van through the Jett Giving Fund, transportation was a major source of anxiety. I’d recommend taking each challenge as its own and eventually the weight will come off your shoulders.”
A recording of Jett Foundation’s Rare Disease Day event can be viewed on YouTube.
Jett Foundation’s Director of Programs Alexa Tinsley says, “Mental health is such a huge topic in the community, and something that we all can relate to. Being able to hear the experiences of the panelists and moderators on how they view mental health and how they cope helped our team understand the rare disease community better. This is just the beginning of the conversation, and we can’t thank our panelists, moderators, and sponsors enough for helping start that conversation.”
This day of recognition and celebration was educational, moving, and very important in many ways for our community. We look forward to recognizing Rare Disease Day and other awareness day events in the future to help spread awareness and important topics across the globe.
The Jett Foundation team is very thankful to all sponsors who supported this event and made another Rare Disease Day celebration possible. Join us in thanking Antisense Therapeutics, Avidity Biosciences, Biomarin, Dyne Therapeutics, Edgewise Therapeutics, Entrada Therapeutics, NS Pharma, Orsini Specialty Pharmacy, PepGen, Pfizer, REGENXBIO, Sarepta Therapeutics, and Solid Biosciences.