Today we’d like to introduce you to Valerie Pappas Llauro.
Hi Valerie, it’s an honor to have you on the platform. Thanks for taking the time to share your story with us – to start maybe you can share some of your backstory with our readers?
In 2011, my 5-year-old son was diagnosed with a rare genetic disease we had never heard of called Duchenne Muscular Dystrophy. Duchenne is a progressive disease, only in boys, that weakens all the muscles over time including the heart and the lungs and there has yet to be a survivor. Most boys are diagnosed by the age of five and stop walking by the age of 13. There is no cure or meaningful treatments currently, however, there are numerous clinical trials taking place and we are very hopeful that Gene Therapy treatment will begin in trials this year and eventually become life-saving treatment.
After a year of mourning for my husband and me and looking into possible treatments all over the world, and found nothing appropriate. We decided that we needed to take action and get involved in the science community and Duchenne organizations to help raise money for scientific research. My husband has extensive brand Marketing experience, managing major global brands, and I have been in the film business for over 20 years handling film marketing and promotion and product placement. We knew we could lend our expertise to the cause to help first and foremost gain awareness. With awareness comes funding, and with funding comes clinical trials and research; with research and trials comes the cure. We began Walking Strong in 2014, with only the mission to gain awareness and raise money for research. We had no idea how we were going to raise funds, but we put our trust in God and allowed Him to guide our steps. Our first fundraising Gala was held in 2015 and our hope was to raise $50,000. To our surprise, we raised $120,000 in the room in one night. We knew what we were doing was right. Through the next year, Alexander was ten years old, and we realized that having a child who is becoming weaker requires many needs within the home and for travel. We were shocked to learn that insurance doesn’t cover stairlifts, ramps, and handicap-accessible vans. We knew that most families could not afford these mobility devices, so at the next Gala in 2016, we surprised a Los Angeles Duchenne family with a handicap-accessible van.
This assistance resonated deeply with donors and the community, and we knew that we needed to have an Assistance Program that provides families with all of their needs. Walking Strong kept growing each year and receiving more donations. The last goal we wanted to achieve was to get a celebrity athlete involved to help with awareness. We felt that Duchenne, being a muscle disease that occurs in boys – it would be perfect to have an athlete to align with. We had interest from USC Trojans football, and Oscar De La Hoya did a social media campaign, but I knew we needed even greater influence. Nothing surprised us more than when the late Kobe Bryant learned about Walking Strong and Duchenne and stepped forward, inviting Alexander and me down to his offices to meet us, talk about how he can help and shoot a video and PSA for Walking Strong. It was one of the greatest moments of our lives, and he posted photos on social media which went viral. In one day, 24MM people saw my son and Kobe and learned about Duchenne. You could not plan that sort of event and it was the first time a big name called attention to Duchenne.
To date, Walking Strong has raised $1,000,000 and has donated over $400K to scientific research at UCLA and Nationwide Children’s Hospital and helped over 50 families around the country with the purchase of handicap accessible vans, medical devices, etc. Our newest initiative is offering FREE mental wellness coaching for all Duchenne families for a year.
Alright, so let’s dig a little deeper into the story – has it been an easy path overall and if not, what were the challenges you’ve had to overcome?
The biggest struggle is balancing our personal time and professions with the needs of Walking Strong. We do not take salaries and are a volunteer-based organization. I myself have been running the Assistance Program myself since the pandemic, so managing that along with my children, Alexander’s needs, and working on films is challenging. As we grow and things start heading towards a more typical environment, we will need to hire someone to handle the Assistance Program. Since it is my baby, so to speak, and I am a Mother with a Duchenne boy, I feel responsible in a sense to deal directly with the families since I walk in their shoes.
Alright, so let’s switch gears a bit and talk business. What should we know about your work?
I have over 20 years of experience working on feature films at both New Line Cinema, Paramount Pictures and freelancing. For the last few years. I have worked on promotional marketing campaigns for films such as the Austin Powers trilogy, Lord Of The Rings, Rush Hour movies, Jackie Chan films, etc. and handled product placement on top films such as Mission Impossible 3, War of The Worlds, Star Trek, and Unhinged. Most recently, I became a Producer on a Nick Hamm film starring Marcia Gay Harden and Jim Belushi which will release next year.
Do you have any advice for those just starting out?
Get an internship in the industry you love. Learn everything you can from your co-workers and BE BOLD. Stand out from the rest by gaining rapport with those you work with and really shine. Be Bold in your actions and asking for work, a job, etc. We live in a virtual world, and most young people coming off the pandemic are having a hard time socializing and speaking. Work on your communication skills and don’t be afraid to be assertive and follow up with people you haven’t heard back from. Most inboxes are overflowed and emails get lost. If you can follow up with phone calls do that.
Never stop learning and growing. I follow Tony Robbins who is a life-changer. When you stop growing, you stop living. Work on YOU everyday mind, body, and soul, and be your best self with positive energy looking forward to your bright future that you can visualize and feel. Also, find a way to serve others and something greater than yourself. It is the most rewarding thing you can do and you give, the laws of the universe will allow you to receive. You get what you focus on – so have a clear intention and go for it!
Contact Info:
- Email: [email protected]
- Website: www.walkingstrong.org
- Facebook: https://www.facebook.com/walkingstrongagainstdmd/?ref=pages_you_manage
