Our Story
ALD Hope is a Canadian-based non-profit organization founded in March 2023 by ALD carrier, and her husband. The organization was created with the aim to raise awareness of Adrenoleukodystrophy (ALD) and Adrenal Insufficiency, advocate for newborn screening, and support families suffering from these devastating diseases. ALD Hope strives to provide hope and assurance to families on their stressful journey, letting them know they are not alone.
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Our story is a rollercoaster ride filled with unexpected twists, from sunny days to medical mysteries. Meet our family, the protagonists of this adventure - Mom, Dad, and our three little ones.
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It all began innocently enough when we noticed a peculiar change in Adam (aka "thing 2"). His skin, once kissed by the sun, started to turn a mysterious shade of dark. Concerned, we consulted our trusted family doctor, who initially brushed it off as mere sun sensitivity. But as time passed, Adam's health took a nosedive in the wild year that was 2021, setting off alarm bells within our family.
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With growing trepidation, we embarked on a medical odyssey, visiting countless doctors in search of answers. Yet, a diagnosis remained as elusive as a mirage in the desert. It wasn't until a vigilant medical professional, with a keen eye for detail, spotted Adam's hyperpigmentation. Their suspicion led us down a winding path to the revelation of a rare and bewildering disease - Addison's disease.
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But that wasn't the end of our journey; it was merely a pit stop. Further tests uncovered the shocking truth: Adam was battling X-linked Adrenoleukodystrophy (X-ALD), a rare genetic disorder that shook our family to its core. The plot thickened in November 2022 when Omar (aka "thing 1") received the same diagnosis, though he bore no symptoms.
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Our family story has been a tumultuous one, fraught with challenges stemming from our lack of knowledge and experience. But amidst the chaos, we glimpsed a ray of hope - the awareness of our situation and the potential to be a guiding light for other families facing similar struggles. Thus, ALD Hope was born, a beacon of support, resources, and advocacy for families grappling with the complexities of ALD and Adrenal Insufficiency. Our adventure continues, but now, we journey with purpose.
ALD Hope's mission is to raise awareness, provide educational resources, advocate for newborn screening, offer financial assistance, organize support groups, and collaborate with medical professionals and researchers to improve treatments and outcomes. The organization strives to ensure that every individual affected by ALD and Adrenal Insufficiency has access to the resources and support they need to thrive.