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Episode 35- Bridging the Gap Between Intention, Action, and Community Inclusion
In this Quest Podcast episode, we chat with the Director of Marketing and Communications at Idealist.org, President for New York Women in Communications (NYWICI) and host of the NYWICI WomenHeard Changemakers podcast.…
AGAMREE ® (Vamorolone), Now FDA-Approved, Offers Hope for Children Living with Duchenne Muscular Dystrophy
The recent FDA approval of Catalyst’s AGAMREE ® (vamorolone) is a beacon of hope for people living with Duchenne muscular dystrophy (DMD), a rare but serious degenerative muscle disease. According…
Coping with Family Caregiver Fatigue
Tips for family caregivers to recognize the signs of caregiver burnout and manage stress to prevent it.
Insurance Denials for Gene Therapy Treatment Delay Access to Care
The FDA approval of ELEVIDYS (delandistrogene moxeparvovec-rokl), the first-ever, gene therapy treatment for young boys living with Duchenne muscular dystrophy (DMD), brought unprecedented hope to families living with DMD. Designed…
Tags: Gene Therapy, Healthcare, Insurance, MDA Care Centers, MDA Resource Center, My Gene Therapy Journey, Resources
New Therapy Brings Hope for Late-Onset Pompe Disease
“Don’t hope for a miracle. Make one,” is the powerful tag line from Extraordinary Measures a 2010 drama film starring Brendan Fraser, Harrison Ford, and Keri Russell. The movie is…
Five Things You Should Know When Diagnosed with Neuromuscular Disease
Sometimes we think we have life figured out but then in the blink of an eye things can change. I lived 30 years of my life healthy and active. Sports,…
Accessible Playgrounds Give Everyone the Benefits of Play
Learn why accessible playgrounds and inclusive playgrounds are good for everyone, how to find them, and how to advocate for them in your community.
Tags: Community, Featured Content, Parenting, Staying Active
How to Help Your Child Make Friends in School
Learn how to develop your child’s ability to make friends in school
Smart Steps to Take in a Medical Emergency
When you live with rare a neuromuscular disease, you should know what steps to take in a medical emergency with first responders and in the hospital.
Tags: Featured Content, Healthcare
DMD Gene Therapy Approval Ignites Hope
The FDA’s approval of Elevidys, the first gene therapy for Duchenne muscular dystrophy (DMD) brings hopes and concerns for families in the MDA community.