About Walking Strong

  • Our Story
  • Our Mission
  • Our Facts
  • Our Team

Meet Alexander.

In 2011, – we heard a phrase we had never heard before – Duchenne Muscular Dystrophy.

After a period of grief and mourning, we managed to gain the strength and courage to learn about Duchenne and meet other Duchenne families.

In our Research, we learned two things:

There has never been a survivor of Duchenne
For the first time, there have been some scientific breakthroughs that give us hope. We decided to turn adversity into strength.

Currently, Alexander is a diligent, curious, creative and happy teenager who loves being with friends and family.  He plays on a competitive power soccer team, The Avengers, and enjoys watching movies and playing video games.

Alexander has a special gift, whose continuous bright smile attracts all who meet him. Despite Duchenne stealing his “footsteps,” he never complains and he never asks “why.”   He has taken his reality and taught us the lesson that life is unexpected and fragile, and it is up to us to find the joy in each moment and appreciate the life we have been given.  Most importantly, discover our purpose.

Duchenne parents are living on a time clock. As most parents make plans and look forward to their children’s future, Duchenne parents, fear the future. We fear what lies ahead for our boys. The time is now for breakthrough treatments for these boys. This generation has the opportunity to be the first-ever survivors.

We founded Walking Strong to solidify our determination and commitment to Alexander and all Duchenne boys, to help them thrive and be hopeful.   

 We hope to keep these boys walking strong, as we continue to walk strong for all Duchenne boys and their families.

Our Mission

Our mission is to build a supportive community to help us end Duchenne Muscular Dystrophy by raising money for ground-breaking research, spreading awareness, and providing aid to children and families with Duchenne.

Our Facts

What Is Duchenne?

(Pronounced “Du Shen”)

Duchenne is the most common fatal, genetic childhood disorder, which affects approximately 1 out of every 5,000 boys each year worldwide. It currently has no cure. Diagnosis occurs around 3 – 5 years of age, usually the first sign is muscle weakness and large calf muscles.

The Duchenne gene is found on the X- chromosome and occurs mostly in boys which progressively degenerates all their muscles over time including the heart and the lungs. It is carried through the mother and often times is a spontaneous mutation and does not run in the family. Duchenne does not discriminate and occurs within any racial, ethnic or economic background.

For other Duchenne resources, please visit:

www.duchenneandyou.com
www.parentprojectmd.org
www.cureduchenne.org

Our Team

Walking Strong’s Board of Directors represent leaders in the forefront of their fields in film, media, legal, financial, and advertising.

Co-Founders

Valerie and Jorge Llauro
valerie@walkingstrong.org

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