Duchenne: HIS life is OUR life
Diseases
Rare Disease
Issues and Challenges
Dana Edwards has encountered: Access to Medicine
My Story
In 2008, I was told that my youngest son had Duchenne muscular dystrophy and to go home and love my son for the limited time we would have with him as there were no options available. My husband and I left the hospital that day like so many other rare disease parents, confused, devastated, little information and zero support. Ultimately, it took some time for me to grieve and come to the realization that I could not accept this answer and set myself searching for more that had to be done.
Since my son’s diagnosis, I have advocated yearly on Capitol Hill to discuss topics of concerns for rare diseases, participated in a parent ambassador program to help others navigate Duchenne, and provided personal perspectives to pharmaceutical companies in the space of caregiving, clinical trials, and the burden of disease. My experiences have pushed my drive for implementing better resources in the rare disease community such as my creations of Porch Nite and AbilityRatings, parent focused support groups that aim to bridge the gap on care and clinical education, life-changing accessible equipment, and meaningful resources.
As my son progressed in his disease, I needed to find a way that would give him back doing things he lost. So I designed the Perfect Lift, a light weight, transport sling for individuals with disabilities and have impacted more than 800+ lives since launching. Currently, I work on my own company Patient Engagement Services to help bridge a gap and provide more education to other parents like myself on research, clinical trials, and FDA approved therapies.
I am a passionate individual that constantly is seeking more opportunities to give back to the rare disease community and implementing impactful resources for families along the way. At the end of the day, I am just a stay at home mom to six kids with one impacted by a rare disease that made his life, our life. While we might be rare, we are stronger because of it.
My Motivation and Inspiration
My son Tanner who suffers from Duchenne muscular dystrophy. He’s our families biggest inspiration and blessing.
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