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Key Takeaway
Timeline
Day Activities
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Morning Meet-up: Kick off Bohring-Opitz Syndrome (BOS) Awareness Day with a heartwarming virtual meet-up. Families, researchers, and supporters from around the globe gather to share stories, offer support, and discuss the latest advancements in BOS research. It's a chance to connect, learn, and feel part of a caring community.
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Educational Workshops: Midday's all about learning and spreading knowledge. Engaging workshops led by medical experts and experienced families cover a range of topics from understanding the genetic underpinnings of BOS to managing daily care challenges. These sessions aim to empower attendees with information and practical advice.
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Evening Candlelight Vigil: As dusk falls, participants join in a poignant candlelight vigil. This solemn event honors individuals with BOS who have passed away and shows solidarity with those still fighting. It's a powerful reminder of the day's purpose: to illuminate the lives touched by BOS and foster hope for the future.
Interesting Facts
1. Rare Genetic Origin
Bohring-Opitz Syndrome (BOS) stems from mutations in the ASXL1 gene, affecting development across multiple body systems.
2. First Identified in 1979
Two Danish doctors, Jens Bohring and Oleksandr Opitz, were the first to describe BOS in medical literature.
3. Annual Awareness Day
April 6 marks Bohring-Opitz Syndrome Awareness Day, dedicated to increasing understanding and support for those affected.
4. Global Observance
Since 2012, Bohring-Opitz Syndrome Awareness Day has been globally recognized, thanks to the efforts of families and advocacy groups.
5. Distinctive Features
BOS is characterized by unique facial appearances, growth delays, and various congenital anomalies, making it a complex disorder.
Why We Love This Day
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Raising Awareness: Bohring-Opitz Syndrome (BOS) Awareness Day shines a spotlight on a rare genetic disorder, helping to increase public understanding and empathy for those affected. On April 6, communities come together to spread the word, making it easier for families dealing with BOS to feel less isolated and more supported. Through various activities and social media campaigns, this day plays a pivotal role in educating people about the syndrome's challenges and the importance of research and support.
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Supporting Families and Research: This special day isn't just about awareness; it's a lifeline for families and researchers. By drawing attention to BOS, it encourages the sharing of resources, experiences, and knowledge, fostering a sense of community among those impacted. Fundraisers and events held on April 6 contribute to vital research efforts, aiming to uncover more about the ASXL1 gene mutation and develop better treatments. For families navigating the complexities of BOS, this day offers hope and a reminder that they're not alone in their journey.
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Celebrating Progress and Resilience: Since its inception in 2012, Bohring-Opitz Syndrome Awareness Day has grown significantly, reflecting the progress made in understanding and managing the condition. Each year, the day serves as a testament to the resilience of individuals with BOS and their families, celebrating the strides taken towards a better quality of life. It's a day of reflection, gratitude, and renewed commitment to the ongoing battle against this rare syndrome, highlighting the strength and perseverance of the BOS community.
Past & Future Dates
| Month | Day | Year |
|---|---|---|
| APRIL | 6 | 2022 |
| APRIL | 6 | 2023 |
| APRIL | 6 | 2024 |
| APRIL | 6 | 2025 |
| APRIL | 6 | 2026 |
| APRIL | 6 | 2027 |
| APRIL | 6 | 2028 |
FAQ
When is Bohring-Opitz syndrome Awareness Day?
Bohring-Opitz Syndrome Awareness Day takes place on April 6th each year.
What is the life expectancy of a child with Bohring-Opitz syndrome?
Some individuals with Bohring-Opitz syndrome do not survive past early childhood, while others live into adolescence or early adulthood. The most common causes of death are heart problems, abnormalities of the throat and airways that cause pauses in breathing (obstructive apnea), and lung infections.
How rare is Bohring-Opitz syndrome?
About Bohring-Opitz syndrome Population Estimate: Fewer than 1,000 people in the U.S. have this disease. Symptoms: May start to appear during Pregnancy and as a Newborn. Cause: This disease is caused by a change in the genetic material (DNA).
What is Bohring-Opitz syndrome symptoms?
Bohring-Opitz syndrome (BOS) is a rare condition characterized by distinctive facial features and posture, variable but usually severe intellectual disability, growth failure, and variable anomalies. Feeding difficulties have a significant impact on overall health in early childhood; feeding tends to improve with age.