We had the good fortune of connecting with Valerie Pappas LLauro and we’ve shared our conversation below.

Hi Valerie, we’d love to hear more about how you thought about starting your own business?
My husband and I decided to start Walking Strong, in order to create awareness and raise money for the rare disease that our son was diagnosed with. Our son had been diagnosed with Duchenne Muscular Dystrophy in 2011 when he was 5 years old. The week before his pre-school graduation was the week our lives changed forever. We had learned that his seemingly, benign muscle-weakness was due to a rare form of muscular dystrophy that is a progressive disease, affecting all the muscles in the body including the heart and the lungs. We had learned that by the age of 12, he would no longer be walking and that there was no cure. We were told we would be lucky if he “lived into his 3rd or 4th decade.” The Neurologist we had only met once, read us this “death sentence” over the phone on a sunny summer day, as our 5 year old son was playing with his 3 year old sister nearby. We decided that taking action would help us feel like we were taking some control. We decided to get involved with UCLA Center For Duchenne Muscular Dystrophy founders and scientists, and were asked co-chair their fundraising Gala for a couple years. In that process, we realized that there wasn’t enough being done to create awareness for such a rare disease, and there wasn’t any publicity or influencer involved to really move the needle. Since my husband and I both come from Marketing backgrounds, Jorge long career working with major Global brands and I working at studios on feature films, allowed us to catapult our ideas and start our own Organization that we could run the way we wanted without dealing with a corporate entity with many layers and red tape.

Alright, so for those in our community who might not be familiar with your business, can you tell us more?
Walking Strong was founded after our 5-year-old son, Alexander was diagnoses with a rare and incurable disease called Duchenne Muscular Dystrophy. Duchenne was a word we had never heard of before. We went from thinking our son was healthy, with perhaps the need for physical therapy, to pretty much being given a death sentence all in one day. After a year or so of allowing the grief and sadness settle, we jumped into action. We immersed ourselves in learning everything we could about Duchenne and helping fundraise for UCLA and a parent-run charitable organization. After a couple of years, our friends and family helped us realize that with our backgrounds in Marketing and Promotions (brands and movies), we could create our own foundation and significantly impact Duchenne. We also would have the creative reign to do it the way we wanted and raise money for what we felt was necessary. To launch the foundation, we hosted an invite-only fundraising Gala for 225 people from our community of friends, churchgoers, family, and co-workers. We provided live music, fabulous cocktails, excellent food, and a compelling presentation that allowed my husband and I to share our story. We introduced our community to the challenges our family was going through. We produced a compelling video educating them on Duchenne and what was needed to help move the science and clinical trials forward and keep our son alive. Our strategy was not to charge a ticket price, but to engage people passionately, educate them on Duchenne, its needs, and to allow them the opportunity to support at a Live Auction/Raise the Paddle; however, they wished. We were very nervous about how it would be received, and our hope was that we would raise $50,000. Well – to our shock, our strategy paid off, and we raised $120,000 that night. Walking Strong was officially born. From there, we had a built-in supporter base, formed a formal Board of Directors, gathered many people in different areas about Walking Strong, who provided us support, guidance, and a platform to promote. That one event that cost us $10,000 to produce, and did not charge for tickets helped us net over $100K. All of our vendors were friends who either donated their services or were severely discounted. The lesson here? Ask, and You Shall Receive. Never be afraid to ask people for help, discounts, etc. 9 times out of 10, they will always say YES. The next set of challenges we faced were: “how do we grow the organization and raise more money each year?” and “how do we get national publicity if we don’t have a major celebrity or influencer as the face of our organization?” Well, our prayers were answered in 1 day. Our board member, and my son’s Godmother, happened to be at the same function as Kobe Bryant where she told him about her Godson with a rare disease called Duchenne, and if he was interested in helping us. Not only was he interested, but he also invited us all to his offices to meet and participate in our next video as well as shoot a PSA with my son. Alexander was 11 years old at the time, and we kept meeting Kobe a secret. We told him we were shooting a video with some high school basketball stars, and that he would appear with them. I will never forget the look on Alexander’s face when Kobe Bryant walked into the room. He was in absolute shock, and all he could do was smile. It was the best day he ever had. Kobe posted spending the time with Alex on his social media pages, and overnight over 24MM heard the word Duchenne, and met my son. Our relationship was solidified, and Kobe supported us each year with video appearances and invited Alexander to play basketball with him at his gym. Because of Kobe’s involvement, his agency, William Morris Endeavor Agency, become sponsors of our Gala and provides priceless sports memorabilia to our auctions each year. Losing Kobe was a tragic loss to the world, as well as our family personally. We will never forget his generosity, love, and sincere support. From there, the doors kept opening, and the USC Football Team became a strong supporter, and Walking Strong was invited by the LA Lakers and the LA Dodgers to events, where we brought ten other Duchenne families to have priceless experiences.. Fox Sports, Spectrum SportsNet, Access Hollywood, and Spectrum News did stories on us. We also realized that our foundation should be about scientific research and assisting Duchenne Families. We launched our Assistance Program, which provides medical devices, handicap accessible vans, service dogs, and offers free Life-Coaching for mental and emotional well-being. The Assistance Program has been life-changing for families and those with Duchenne all over the country and has become the pillar of Walking Strong. In just five years, we have raised $1,000,000, given over $400,000 to scientific research, and provided assistance to dozens of Duchenne families. Walking Strong is still run solely by volunteers, and we could never have imagined it. Through the process, we have learned a fundamental lesson in fundraising. People are eager to give when they are giving to something tangible. We are all bombarded through advertising to give to “research” for large charitable organizations with massive overhead, but we never see where our money goes. By actually seeing a Duchenne family receive a handicap accessible van, or a service dog, within a few months of giving is profound and encourages support and keeps it growing. We produce an updated Assistance video each year, highlight some of the families we have helped, and it resonates with people. Providing this context to our supporters solidifies that their generous donation is tangible and immediately changes lives. They see their contribution on screen, the lives they have impacted, and there is never a dry eye in the house at the end of the video. The live auction begins right after, and all the hands go up to donate. Lessons Learned: Be Transparent, Be Impactful and Offer Hope.

If you had a friend visiting you, what are some of the local spots you’d want to take them around to?
Los Angeles has such incredible diversity in so many ways appealing to all interests and cuisine. I would begin the tour with the roots of LA and take them to Hollywood Blvd. to see old nostalgic Hollywood, drive by Paramount Pictures on Melrose Ave. and then end up at The Grove/Farmers Market for lunch. Downtown has such a great vibe now that you could do cocktails at Perch, or go to the Nomad or Red Bird or even Japantown for dinner. I would take them down Hollywood Blvd to show them the sites and stop in for a nightcap martini at Musso & Frank’s Hollywood’s oldest restaurant and introduce them to some of the waiters who have been there for 50 years. Brunch at the top of the Waldorf Hotel with the most gorgeous 180 degree view of the city. Beverly Hills is a must-see with a trip down Rodeo Drive and of course seeing the famous Beverly Wilshire Hotel. Dinner in Beverly Hills at the famous Spago or the newer Greek seafood restaurant Avra has great people watching. On another day I would head west on the 10 to Ocean Blvd in Santa Monica and perhaps get out and walk along Ocean Blvd for beautiful views of the beach, and see where so many shows and movies were filmed.. For lunch, head up the Coast to either Malibu Cafe at the Pier, or for a more rustic place, my favorite is Malibu Seafood, where you sit outside and enjoy the ocean air. After that, I would relax at Westward Beach in Point Dume where most of the time there are Dolphins giving a free show for all to see. After a day at the beach, relax at The Sunset Restaurant right across from the sand for a sunset cocktail and some oysters. Head home via Kanan Road and pass “The Bachelor House.” There are a couple of great eating spots off Kanan Road but one place, in particular, is a true unknown gem called OLD PLACE. It is over a century old Post office, turned restaurant that looks like you have stepped back into the 1800s. As you drive up, you’ll smell the meat cooking in the smoker. It is truly intoxicating. There are 6 wooden booths and a big old oak bar, and an upright piano that looks like it’s been there since the beginning. It is open for breakfast, lunch, and dinner (Weekends only) and you need a reservation. For dinner, you’ll get your steak in a cast-iron as well as two guys with guitars walking around getting the whole place singing and clapping. It is the most unique place there is with great food, and brings us back to a simpler time, which is what we need now more than ever.

The Shoutout series is all about recognizing that our success and where we are in life is at least somewhat thanks to the efforts, support, mentorship, love and encouragement of others. So is there someone that you want to dedicate your shoutout to?
Our incredible and supportive friends and family, who encouraged us to start our own organization and gave us all the tools to make it happen. One dear friend who is an attorney, Dean Masserman set up the entire foundation for us at no charge. Others helped plan and organize our first gala, one friend handled the press releases and helped us with messaging, and seven friends joined our Board of Directors. My son’s Godmother, Laurie Anast was at an event with Kobe Bryant, and she walked right up to him, handing him a note that explained the disease her Godson asking if he had any interest in learning more about the cause. From that day, led to him inviting us down to his office and shooting videos for us two years in a row, support of our family and our cause Because of Kobe’s social media post which caught the eyes of 24MM followers, his agent from William Morris, made a generous donation, and had supported our gala’s silent auction each year with priceless sports memorabilia. We were provided wings with which to fly and changed thousands of lives.

Website: www.walkingstrong.org
Instagram: walkingstrongfoundation
Facebook: @walkingstrongagainstdmd
Youtube: https://www.youtube.com/channel/UCQsTg9xTYUc8fVIN2vyE7pA/

Image Credits
Valerie Llauro

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