https://www.maddiesspark.org/spark-stories daily 0.75 2026-06-29 https://www.maddiesspark.org/spark-stories/were-making-history-join-us-for-the-first-ever-vlcad-deficiency-awareness-day monthly 0.5 2026-06-27 https://images.squarespace-cdn.com/content/v1/699f4cc07b4bf973dc4208d8/0be8aa89-95da-4f76-9704-f939b1bb97a4/Be+the+Spark_VLCAD+Day_FB+Cover1.png Spark Stories - We're Making History: Join Us for the First-Ever VLCAD Deficiency Awareness Day https://images.squarespace-cdn.com/content/v1/699f4cc07b4bf973dc4208d8/b8cc9294-da4c-45a6-8f37-67f1e8de9738/About+VLCAD+Carousel_page+2.png Spark Stories - We're Making History: Join Us for the First-Ever VLCAD Deficiency Awareness Day - VLCAD (Very Long-Chain Acyl-CoA Dehydrogenase) deficiency is a rare genetic metabolic disorder that affects how the body turns certain fats into energy. For individuals living with VLCAD, everyday things like illness, fasting, physical activity, or even a growth spurt can create serious medical challenges. https://images.squarespace-cdn.com/content/v1/699f4cc07b4bf973dc4208d8/2d566432-37d4-4109-b26f-0db269833794/Share+Your+Spark_Brighter+Future.png Spark Stories - We're Making History: Join Us for the First-Ever VLCAD Deficiency Awareness Day - Maybe your spark is your child. Maybe it's a family member. Maybe it's newborn screening. Maybe it's hope for better treatments. Or maybe it's the researchers working tirelessly behind the scenes to improve outcomes for VLCAD families. https://images.squarespace-cdn.com/content/v1/699f4cc07b4bf973dc4208d8/0f1a8993-76ef-462b-8add-aa77dec404e8/Be+the+Spark+Tshirt+social+media+promo++%281%29.png Spark Stories - We're Making History: Join Us for the First-Ever VLCAD Deficiency Awareness Day - One of the easiest ways to show your support is by wearing your spark. To celebrate the inaugural VLCAD Deficiency Awareness Day, we've created official awareness shirts that help spread awareness while supporting something even bigger. 100% of the proceeds from every shirt sold will directly support VLCAD research efforts led by Dr. Jerry Vockley and his team at UPMC Children's Hospital of Pittsburgh. https://images.squarespace-cdn.com/content/v1/699f4cc07b4bf973dc4208d8/408bf254-e589-499b-a64c-d9329bb71fea/Social+MediaPartner+Toolkit++2026+VLCAD+Day+%283%29.png Spark Stories - We're Making History: Join Us for the First-Ever VLCAD Deficiency Awareness Day - ✨ Social media graphics ✨ Share Your Spark templates ✨ Educational VLCAD resources ✨ Facebook cover photos ✨ LinkedIn banners ✨ Profile frames ✨ Sample captions ✨ Awareness Day flyers https://images.squarespace-cdn.com/content/v1/699f4cc07b4bf973dc4208d8/a8578572-b270-431f-b403-61930a544e7a/Givebutter+campaign+cover+photo+%282%29.png Spark Stories - We're Making History: Join Us for the First-Ever VLCAD Deficiency Awareness Day - Make it stand out Awareness is important. But awareness alone isn't enough. That's why Maddie's Spark Foundation launched the Early SparCK Initiative, a fundraising campaign dedicated to accelerating research that could transform how VLCAD is managed at home. Today, families often wait hours, or even days, to know whether dangerous muscle breakdown is occurring. During a metabolic crisis, that delay can make all the difference. Through the Early SparCK Initiative, we are supporting Dr. Jerry Vockley and his research team at UPMC Children's Hospital of Pittsburgh as they work to advance an emerging at-home continuous CK monitoring and disease management device toward clinical trials. This technology has the potential to transform how individuals living with VLCAD deficiency and related fatty acid oxidation disorders manage their condition at home. By providing earlier insight into dangerous muscle breakdown, families and clinicians may be able to respond more quickly during metabolic crises, make more informed disease management decisions, reduce delays in emergency care, and ultimately improve long-term health outcomes and quality of life. For VLCAD families, this isn't just a research project. It's a potential game changer. If you're looking for another way to participate in VLCAD Deficiency Awareness Day, consider making a donation to support the Early SparCK Initiative and help move this promising technology closer to the families who need it most. https://www.maddiesspark.org/spark-stories/faces-of-vlcad-stories-of-strength-resilience-and-hope monthly 0.5 2026-06-29 https://images.squarespace-cdn.com/content/v1/699f4cc07b4bf973dc4208d8/1780074134479-ZSXDTFVHCDFH2DUGIVZA/IMG-0870+%282%29.JPG Spark Stories - Faces of VLCAD: Stories of Strength, Resilience, and Hope - Ezra, age 2 https://images.squarespace-cdn.com/content/v1/699f4cc07b4bf973dc4208d8/1780234344810-LFLLMF3YK4I1E4VTZ0SK/Isla.jpg Spark Stories - Faces of VLCAD: Stories of Strength, Resilience, and Hope - Isla, age 3 https://images.squarespace-cdn.com/content/v1/699f4cc07b4bf973dc4208d8/1780074158208-YAZXFE6ZA8IADF0M49HH/160495436_4pn4pfdb07.jpg Spark Stories - Faces of VLCAD: Stories of Strength, Resilience, and Hope - Maddie, age 5 https://images.squarespace-cdn.com/content/v1/699f4cc07b4bf973dc4208d8/1780074128342-OR0EVI88H1FNY1W50O5U/image2.jpeg Spark Stories - Faces of VLCAD: Stories of Strength, Resilience, and Hope - Violet, age 7 https://images.squarespace-cdn.com/content/v1/699f4cc07b4bf973dc4208d8/1782733580758-7TMB7YNE6XDDVIKWSE8D/Brody%2BGray%2B%2B%25282%2529.jpg Spark Stories - Faces of VLCAD: Stories of Strength, Resilience, and Hope - Brody, age 15 https://www.maddiesspark.org/spark-stories/the-invisible-mental-load-of-raising-a-child-with-a-rare-disease monthly 0.5 2026-05-13 https://images.squarespace-cdn.com/content/v1/699f4cc07b4bf973dc4208d8/d1c1e410-f607-4bf9-8619-3104849ca7e5/1Y3A8357+copy.jpg Spark Stories - The Invisible Mental Load of Raising a Child With a Rare Disease - A Rare Disease Parent’s Perspective During Mental Health Awareness Month May is Mental Health Awareness Month. In this personal story, Maddie’s mom, Ashley, shares the emotional realities of raising a child with VLCAD deficiency from medical trauma and caregiver burnout to finding support, connection, and community through rare disease advocacy. https://www.maddiesspark.org/spark-stories/Blog Post Title One-3zaa9-zlxng-67tfc-wryg4 monthly 0.5 2026-05-06 https://images.squarespace-cdn.com/content/v1/699f4cc07b4bf973dc4208d8/1778080901665-5R5TMM4UKBNFCIUMFBMY/Vockley%2Bspring%2Blab%2Breport.png Spark Stories - Maddie’s Spark Foundation Featured in UPMC Children’s Philanthropy Update - Highlighting Hope, Research Progress, and the Future of VLCAD Care We are honored to share that Maddie’s Spark Foundation and Maddie’s journey were recently featured in the Spring 2026 Philanthropy Update from the Vockley Lab at UPMC Children’s Hospital Foundation. This feature shines a light on the realities families face living with VLCAD deficiency while also highlighting the incredible progress being made in rare disease research, newborn screening, and precision medicine. 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