This article was a winner of Lookout’s 2026 Journalism Scholarship Challenge, which invited high school students to highlight an unsung hero in their lives. Learn more and find all of the winners here.
Finding out your child has a rare disease is something no parent can ever prepare for. You are faced with challenges you never imagined and yet there are some special people who find themselves in this situation and are able to persevere with honesty, grace and hope. Sara Aluffi is one of those people and a hero in our community.
Sara is currently the manager at Paradise Beach Grille in Capitola and has been a restaurant manager at other local restaurants in Santa Cruz for years. Besides working full-time, Sara is also raising two sons. Shortly after her son Joaquin’s fifth birthday, Sara found out that he had Duchenne muscular dystrophy also known as DMD, a rare genetic disease. This rare genetic condition causes the muscles in the body to become weak and damaged over time, and is eventually fatal. Children who at one time could walk, run and jump lose the ability to do those things.
After Sara’s son was diagnosed with Duchenne’s, she set out to learn everything she possibly could about the disease and how to help her child. Sara started a foundation called Joaquin’s Warriors to raise funding and awareness about DMD. Through Joaquin’s Warriors, Sara has raised money, awareness and hope for families fighting this disease.
Sara collaborates with several organizations such as Parent Project Muscular Dystrophy, or PPMD (the biggest MD organization in the world), and Cure MD. She has participated in conferences, fundraising and research opportunities. Sara is incredibly articulate, funny and kind. She minored in public speaking in college and was asked by PPMD to speak in Washington, D.C. She represented our district of California in sharing about Duchenne muscular dystrophy and what is needed to support families and to find a cure. She has also been involved in advocating for newborn screenings and presenting at conferences of medical professionals on how to care for children and families through the diagnosis and treatment process.
When asked what inspires her to do this work, Sarah said, “Joaquin absolutely, 100% does, and really all the kids do.” Sara’s advocacy work goes beyond Duchenne’s as she also supports families and children with other needs. She is so knowledgeable about the insurance and medical systems that people often reach out to her for advice and help. People also ask for her support with challenges relating to access and services at schools.
I asked Sara what advice she can give to others who want to make a difference around an issue. She says that you should first learn everything you possibly can and speak to the people who are directly impacted to find out what they want and need. Sara credits being able to get wider community participation and notice of her work with what she calls “show and tell.” Sarah shared that you have to show people what you are doing and hopefully that inspires them to use their time, energy and expertise to help as well. You also have to tell everyone what you are doing. People care about causes that they know about.
I spoke with Kate Adams, my mom, who is the director of special education for a school district over the hill. A family in my mom’s school district found out that both of their sons had muscular dystrophy. When one child is diagnosed, there is a 50% chance that a sibling, if male, will also be affected. My mom called Sara and asked: When you received this diagnosis for your son, what did you need and what can I do to support this family? Sara made some suggestions and then immediately asked to be connected to the family. My mom reached out to the family for their permission, and within days Sara had connected with them and shared resources, contacts, doctor recommendations and direct supports. A couple of weeks later, Sara sent a photo to my mom of her with this parent at a family retreat and conference on muscular dystrophy. They have become friends and part of a shared support system. Her support at a critical point in their journey is the type of thing she has done many times. My mom described Sarah as “a force – she is an uncompromising advocate and champion for children while also being honest, raw and self-deprecating. She shares her highs and lows so others know strength also means being vulnerable and having a sense of humor. She is an inspiration for me and someone whose opinion I seek to be better at my job and as a human.”
I have personally learned how strong parents can be in advocating for their children and how impactful a disease like muscular dystrophy can be on an entire family. Sara’s advocacy is very inspiring, and I feel like I can do more to help in my community. There are people who really care and are passionate about making a difference. In conclusion, Sara Aluffi is an awesome person who deserves recognition for the real difference she is making.
Finley Adams is a student at Harbor High School