
Jett Foundation Highlights Adaptive Living During Eighth Annual Rare Disease Day Event
Panelists and moderators shared their experiences with adaptive living, encouraging others to be limitless with their interests.
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An opportunity to engage with others through sessions on expressive art therapy, sound therapy, hope & gratitude, and more.
Mental health issues impact everyone in our community; from parents and caregivers to individuals living with Duchenne as well as healthcare professionals and industry partners. We hope that every member of our community can benefit from the sessions and resources available through Jett’s Mental Health and Wellness Resource Fair and Resource Library. Sessions are open to all and we encourage you to join as many as possible.
Living With Gratitude
Jada Bafus, Jett Community Ambassador
Grace Trail
Anne Jolles, Founder
Chair Yoga Popup
Maddie Tooley
Sound Therapy/Reiki
Whitley English
Mental Health & Wellness Wrap Up
Jada is a mother to Mason (5) and Jack (2). Mason and Jack were diagnosed with Duchenne muscular dystrophy in the spring of 2023. Jada decided to leave her career to become a full-time caregiver and advocate for Duchenne. As a family, they started a YouTube channel (@TheBafusFamily) to give hope, document their medical journey, and to shine light on Duchenne for the community.
Anne Jolles is the creator of Grace Trail. Grace Trail is a 5 step resiliency model that begins with gratitude and ends with hope. The Grace Trail was created when Anne was experiencing family challenges and struggling to cope.
Her mission is to bring Grace Trail out to the world. She is a good friend of Jett Foundation and has shared this healing and coping process with Jett families for many years. She’s excited to “walk” Grace Trail with all of you as you experience this process and then take it into your life.
Whitley English is the founder of WNC GEMS LLC Generating Empowerment through Mindful Solutions. She is a survivor of intimate partner violence, enduring a near-fatal attack that highlighted the deep-seated inequities and systemic violence within our justice system. As a community health worker specializing in violence prevention, she has transformed her pain into purpose, employing holistic wellness strategies to support both her own healing journey and those of other trauma survivors and service care providers. She believes that self-care is essential to enhancing productivity and maximizing quality of life. As a sound practitioner, she uses frosted crystal quartz bowls and essential oils in a synergistic modality, offering a profound sense of release and relaxation through a technique called Aromatic Neural Repatterning (ANR).
Madison Tooley is a registered nurse and dance instructor who loves spending time outdoors, often taking her dog and three cats on adventures. Madison cherishes time with family and enjoys staying active. Her journey into chair yoga began with her love for yoga in childhood, college, and through dance classes. For Madison, mental health is about making healthy choices, understanding emotions, and taking breaks to recharge. She believes wellness enhances quality of life. Living with gratitude, to her, means appreciating what she’s earned and those she has crossed paths with, always striving to live fully and mindfully.

Panelists and moderators shared their experiences with adaptive living, encouraging others to be limitless with their interests.

Awareness boxes, in-person luncheon, virtual panel discussion, and so much more!

Individuals from the Duchenne and rare disease community shared on obtaining their license, experiencing great thrills, starting careers, and more.

Panel discussions, accessible and adaptation demonstrations, a luminaria ceremony, and more!

Jett Foundation’s Thriving with Duchenne Rare Disease Day event focused on anxiety and mental health

On September 7, 2022, Jett Foundation hosted its seventh annual World Duchenne Awareness Day (WDAD) celebration to recognize those in the Duchenne community.

On February 28, 2022, Jett Foundation hosted a virtual event to celebrate Rare Disease Day 2022. This was Jett Foundation’s 5th annual Rare Disease Day, which welcomed speakers from the Duchenne and rare disease communities in a panel discussion themed “Thriving with Duchenne.”

For the past several years, Jett Foundation has hosted an annual World Duchenne Awareness Day (WDAD) event of celebration and remembrance in the Boston area, the epicenter for rare disease research. Once again we were able to take the opportunity to broaden our celebration beyond our traditional Boston area event and engage with our families and partners all across the country virtually.
Tune in on February 29 to hear from our panel and moderators on how they are accomplishing goals and living life to the fullest!
Your gift helps Jett Foundation provide programming and opportunities, such as Camp Promise, to many families impacted by Duchenne muscular dystrophy each year.