Walk Strong With Us and Change The Lives of Those With Duchenne

There is no greater satisfaction than helping those in need, easing their burden, and bringing joy into their lives. When we started the foundation, in order to raise money for research and create awareness, we did not realize that our core mission would become helping Duchenne families overcome their many struggles with Duchenne.  We have […]

Donation for a Cure During Social Distancing

During this pandemic when the world is so uncertain, Walking Strong has not wavered in helping numerous families that have come to us for assistance as well as donate much-needed funds to our clinic,  The Center For Duchenne Muscular Dystrophy at UCLA (CDMD). Helping families and funding research is what keeps us going and continuing with […]

Walking Strong Gala 2019 raises over $350,000 – a total of $1,000,000 in 5 years!

The 2019 Annual “Night Of Strength” Gala was the most successful to date.  With over 350 attendees, silent and live auctions, incredible food and a powerhouse performance by NBC’s “The Voice” finalist Keisha Renee.  The silent and live auction featured priceless and sought after items, such as Guest passes for Coachella,  a weekend in New […]

Water – A refuge from Duchenne

I am sitting and watching my boy experiencing freedom. Free from his wheelchair, free from constriction, and tightness and free from Duchenne – for a moment. We are in Miami, basking in the warm and humid weather, and my son is floating in the water light as air and is soaring. The sun is beating […]

Duchenne Parent Guide for Sanity

It is not often that we find tools and resources for parents for coping and living with Duchenne.   Each one of us is consumed in finding the best therapy for our boys, getting them into the right clinical and the best clinical care. NONE of us are focusing on our own needs.   What?  Do we […]

The Basketball Hoop

There’s a basketball hoop standing in my backyard.   In February, Alexander begged us for it, even though his walking began to decrease in December. He loved it and was so proud of himself every time he would make a basket, albeit the hoop was hung very low to accommodate him.   He was flip flopping between […]

FDA Finally Approves First Ever Treatment Drug – Finally!

100 days after the FDA’s legally mandated decision date,the FDA announced accelerated approval for  Eteplirsen by Sarepta Therapeutics.  Eteplirsen is the first therapy drug approved for Duchenne which works to skip over the deleted exons.  The approval did come without bureaucratic “drama” and in-fighting.  There were definite opponents for approval, based on the nonsense of […]