NEWPORT BEACH, Calif., (September 20, 2022) – CureDuchenne, a leading global nonprofit focused on finding and funding a cure for Duchenne muscular dystrophy, partnered with Stanley Cup-winning, NHL All-Star and retired Anaheim Ducks captain Ryan Getzlaf for the 11th Annual Getzlaf Golf Shootout. Held on September 9th and 10^th at Monarch Beach Golf Links, the event raised more than $750,000 to support CureDuchenne. The Getzlaf Golf Shootout, hosted by Ryan and Paige Getzlaf, brought together professional athletes, celebrities, and community leaders for a two-day experience. The event featured an MVP Dinner reception on Friday evening followed by an action-packed day of activities and golf at the beautiful Monarch Beach Golf Links in Dana Point, California.

“When Paige and I partnered with CureDuchenne to start this tournament 11 years ago, we had no idea what it could become and the impact it could make on this community. We are truly humbled by the support we receive year after year,” said Ryan Getzlaf. “We are closer to a cure for this devastating disease than ever before and know that together, we will find a cure.”

NHL All-Star and 2007 Stanley Cup Champion Ryan Getzlaf played a remarkable 17-year career for the Anaheim Ducks, holding the record as the franchise’s all-time leading scorer and serving as team captain for the last 11 years. Over the past 11 years, Ryan and Paige have raised more than $5.3 million to fund early-stage research and bring new therapies for boys and their families dealing with Duchenne muscular dystrophy.

Duchenne muscular dystrophy, the most common and severe form of muscular dystrophy, is a fatal genetic disease affecting roughly 1 in 5,000 male births. Individuals with Duchenne are typically diagnosed as toddlers, lose the ability to walk in their early-teens and often succumb to the disease in their mid-20s. Since CureDuchenne was created in 2003, the organization has raised over $50 million for research and to develop impactful programs that help families living with Duchenne and has funded 16 research projects that have advanced to human clinical trials.

“The ongoing dedication and support of the Getzlaf family is vital in helping us get closer to a cure for thousands of people with Duchenne muscular dystrophy,” said Debra Miller, founder and CEO of CureDuchenne. “We are eternally grateful to the Getzlafs, our generous community, ​​donors and athletes who support the Getzlaf Golf Shootout. Every dollar raised and invested into cutting-edge research moves us closer to a cure. Now more than ever, hope for a cure is on the horizon.”

The event kicked off with select sponsors and Anaheim Ducks players attending an MVP dinner with live auction. The golf tournament took place the following day, starting with a breakfast for families living with Duchenne. Golfers were greeted by LA Rams Cheerleaders and Ducks Power Players before enjoying a round of golf with contests, games and giveaways throughout the course, including a dunk tank and hole-in-one opportunities to win a Porsche.

This year’s sponsors included Eydie and David MacInnis, Porsche, FR Construction, F & F Capital Group, Roger Dunn Golf Hawaii, WHGC P.L.C., Air Control Systems, Duke Spirits, As One Cru, OC Raw, Ameriprise Financial, PMG, TaylorMade, Independent Capital Management, Inc., The Sports Corporation, Central Coast Disc Golf, Wayne Farms, Engels Janzen, Ayres Hotels, Ayres Construction Company, TSG Wealth Management, Brewery X, Realtor Heidi Stoops, Tito’s Handmade Vodka, Lava, California Love Drop, Tap Truck, CaliFino Tequila, Entertainment Concepts, The Long Drink, TransUnited Financial Services, Inc., Krank Golf, Violent Gentlemen, Glaceau Smartwater, Anuva Capital and Khalil Law Group.

For more information about CureDuchenne, please visit www.cureduchenne.org.

About CureDuchenne
CureDuchenne is recognized as a global leader in research, patient care and innovation for improving and extending the lives of those with Duchenne muscular dystrophy. As the leading genetic killer of young boys, Duchenne affects more than 300,000 individuals living today. CureDuchenne is dedicated to finding and funding a cure for Duchenne by breaking the traditional charitable mold through an innovative venture philanthropy model that funds groundbreaking research, early diagnosis, and community education. For more information on how to help raise awareness and funds needed for research, please visit www.cureduchenne.org.

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Original Webinar date August 18, 2022

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CureDuchenne Physical Therapist Re-certification Quiz  CLICK HERE

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The camaraderie developed among teammates in sports helps participants form strong bonds with other players. Even individual sports have adaptations that could prove to be the next enjoyable hobby to enrich your life. In addition to the social aspects of competing in sports, both team and individual sports can also help contribute to long-term quality of life through the benefits of cardiovascular exercise and improved self-care skills.

Getting exercise is an important part of staying healthy for everyone. Even if someone with Duchenne is in a wheelchair, moderate exercise is still important to improve muscle tone, circulation and to keep the heart as healthy as possible. For instance, researchers surmise that power wheelchair soccer helps sustain light to moderate intensity exercise for participants that may help enhance functional capacity and performance of daily living activities.

“Participation in sports like power soccer provides many social and emotional benefits, so it’s really great to see research that shows a potential cardiovascular benefit as well.”

– Jennifer Wallace Valdes, PT, CureDuchenne

Yet, according to the CDC, less than half of all individuals with mobility disabilities get any physical activity at all, and may suffer from the negative impact of a sedentary lifestyle. But when matched with the right activity, adaptive sports are helping expand ways for people with Duchenne to play, compete and stay healthy.

Not only are individuals with Duchenne participating in adaptive sports, they’re setting records and competing at the highest levels. In fact, a Swedish sport shooter with Duchenne won gold in the Mixed 10m Air Rifle event at the 2020 Summer Paralympics in Tokyo with a final score of 252.8 – setting a new record. And identical twins battling Duchenne muscular dystrophy are representing their country on Team USA’s power wheelchair soccer team.

Duchenne affects each individual differently. What an individual will gravitate toward and enjoy varies, and you’ll want to be certain that it is right for you. So as always, be sure to check with your doctor and a certified physical therapist before engaging in any new activity that involves physical exertion. Take caution and slowly ease yourself in to prevent damaging your muscles or injuring yourself.

Adaptive Sports Resources

Whether you are interested in participating in adaptive sports for fun or for medals, here are some resources to get you started:

• The Adaptive Sports Foundation provides a variety of opportunities for children and adults with disabilities to discover a lifelong passion for outdoor physical activity.
• The University of Utah TRAILS program offers education and equipment for people with complex physical disabilities to participate in sports like skiing and sailing, watersports and more. https://www.utrails.us/about
• Stride Adaptive Sports, based in the NY area, educates and empowers individuals with special needs in life-changing sport and recreation programs to sustain healthy, active and fun lifestyles. https://www.stride.org/
• Power Soccer is played in more than 30 countries, and Power Soccer USA https://www.powersoccerusa.org/ can help you find a local club or start one of your own. The https://powersoccershop.com/ can help you outfit your current power chair or upgrade to better compete in the game.
• The National Sports Center for the Disabled offers an adaptive ski school and a number of ways to enjoy the slopes. https://nscd.org/program/adaptive_ski_school/
• Did you know that kayaks sailboats can be fully adapted as well? US Sailing has a robust adaptive sailing program. https://www.ussailing.org/education/adult/adaptive-sailing/
• If hockey sounds more appealing, you might want to know that the International Power Chair Hockey World Championship 2022 took place in August! http://powerchairhockey.org/denmark-wins-the-ipch-world-championship-2022-in-sursee/
• Get involved in Archery, one of the world’s oldest sports! https://www.adaptivesportsusa.org/sports/archery/

For an introduction to some of these programs listed and more, watch this video from the 2019 FUTURES FUN panel discussing adaptive sports, activities, and equipment for individuals with Duchenne: https://staging.cureduchenne.org/resource-library/2019-futures-fun-panel/

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Boulder, Colo., (September 7, 2022) – Edgewise Therapeutics, Inc., (NASDAQ: EWTX), a clinical-stage biopharmaceutical company focused on developing orally bioavailable, small molecule therapies for the treatment of rare muscle disorders, today announced that the U.S. Food and Drug Administration (FDA) has authorized a clinical trial of EDG-5506 in children with DMD. The Company expects to begin dosing participants in the LYNX Phase 2 trial in the fourth quarter of 2022. EDG-5506 is an investigational orally administered small molecule myosin modulator designed to protect injury-susceptible fast skeletal muscle fibers in dystrophinopathies such as DMD and Becker muscular dystrophy (BMD). 

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Sarepta Therapeutics, Inc. (NASDAQ:SRPT), the leader in precision genetic medicine for rare diseases, today announced that the U.S. Food and Drug Administration (FDA) has removed the clinical hold on SRP-5051 (vesleteplirsen), the Company’s investigational, next-generation peptide-conjugated phosphorodiamidate morpholino oligomer (PPMO) to treat patients with Duchenne muscular dystrophy who are amenable to exon 51 skipping. After discussions with FDA and as part of the lift, Sarepta will adjust the global trial protocol to include expanded monitoring of urine biomarkers.

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