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 […]

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 – NOT FOR DUCHENNE

April 26, 2016   As I sit bleary-eyed  on the airplane flying home from what should have been a “successful” trip to DC, I am still stunned and disheartened from yesterday after a grueling TWELVE HOUR meeting with the FDA and it’s Advisory Committee, that went from an historic event into a catastrophe.   I want […]

Clinical Trial – Day 1

I guess you can say – “we are lucky.’   After 5 days of putting Alexander through extensive testing (a 3 hour MRI, extensive bloodwork, ECG, Pulmonary, 2 days of physical therapy assessment,   fecal testing (ek!) and a physical exam), we received official word last night that he was accepted into a clinical trial for a […]

Two classmates – two trials….heroes amongst us

Today I had a sad day visiting a classmate of Alexander’s at Children’s Hospital. He had a malignant brain tumor removed 6 days ago. His name is Cooper and he is 9. His mom is a friend of mine, who recently found out about Alexander having Duchenne, and graciously committed herself to helping us raise […]