Learn about the history and significance of Congenital Diaphragmatic Hernia Action Day, and discover ways to get involved in raising awareness and supporting families affected by this rare condition.
Congenital Diaphragmatic Hernia (CDH) Action Day is an annual awareness day observed on April 19th to raise awareness about Congenital Diaphragmatic Hernia, a birth defect that affects the diaphragm, a muscle that separates the chest from the abdomen. CDH Action Day is an opportunity for families, medical professionals, and organizations to come together to raise awareness about CDH and to support those affected by the condition. The day is marked by various events and activities, including fundraisers, educational campaigns, and social media campaigns, aimed at raising awareness about CDH and providing support for those who have been affected by this condition.
History of Congenital Diaphragmatic Hernia Action Day
Congenital Diaphragmatic Hernia (CDH) Action Day was first observed in 2014. It was founded by the CHERUBS (Congenital Diaphragmatic Hernia Research, Awareness and Support) organization, which is the world’s largest non-profit organization dedicated to CDH. The aim of CDH Action Day is to raise awareness about CDH and to promote research into the causes and treatment of the condition.
CDH Action Day was established in memory of Shane Torrence, a CDH angel who passed away on April 19, 2011. Shane’s mother, Dawn Ireland, who is the founder and president of CHERUBS, launched CDH Action Day as a way to honor her son and to raise awareness about the condition that took his life.
Since its inception, CDH Action Day has grown to become a global event, with participants from all over the world coming together to raise awareness about CDH and to support those affected by the condition. The day is now marked by a variety of events and activities, including walks, runs, bike rides, fundraisers, educational campaigns, and social media campaigns, all aimed at raising awareness about CDH and supporting those affected by this condition.
Congenital Diaphragmatic Hernia Action Day Timeline
Here is a timeline of significant events and milestones related to Congenital Diaphragmatic Hernia (CDH) Action Day:
- 2014: The first CDH Action Day is observed on April 19th, marking the anniversary of the passing of Shane Torrence. The day is launched by the CHERUBS organization to raise awareness about CDH and to promote research into the causes and treatment of the condition.
- 2015: CDH Action Day expands to include participants from around the world. Awareness-raising activities take place in countries including the United States, Canada, Australia, and the United Kingdom.
- 2016: CDH Action Day launches a social media campaign using the hashtag #CDHawareness. The campaign encourages people to share their CDH stories and to spread awareness about the condition on social media platforms.
- 2017: The first annual CDH Research Grant is awarded to support research into the causes and treatment of CDH. The grant is funded by the CHERUBS organization, with the aim of promoting scientific advances in the field of CDH research.
- 2018: CDH Action Day launches a virtual walk campaign called “Walk to the Moon”. Participants are encouraged to walk or run a virtual distance of 238,855 miles, which is the distance from the Earth to the Moon. The campaign raises funds for CDH research and promotes awareness about the condition.
- 2019: CDH Action Day partners with other organizations and advocates for the passage of the Congenital Diaphragmatic Hernia Research, Awareness, and Care Act. The act is designed to increase federal funding for CDH research and to improve access to care for CDH patients and families.
- 2020: CDH Action Day takes place amidst the COVID-19 pandemic, with many activities moving online. The CHERUBS organization launches a virtual art auction to raise funds for CDH research and support services.
- 2021: CDH Action Day celebrates its 8th anniversary. The day features a range of activities, including educational webinars, social media campaigns, and fundraising events, all aimed at raising awareness about CDH and supporting those affected by the condition.
How to Observe Congenital Diaphragmatic Hernia Action Day
There are many ways to observe Congenital Diaphragmatic Hernia (CDH) Action Day, both in-person and online. Here are some ideas:
- Wear purple: Purple is the official color of CDH awareness, so consider wearing purple clothing or accessories on April 19th to show your support for CDH awareness.
- Organize a fundraiser: Host a fundraiser to raise money for CDH research or to support families affected by the condition. This could be a bake sale, a charity walk, or an online auction.
- Share your story: Use social media to share your CDH story and to raise awareness about the condition. Use the hashtag #CDHawareness to connect with others and to spread the word about CDH.
- Learn more: Take the time to learn more about CDH and its impact on families. Visit the CHERUBS website or other CDH organizations to learn more about the condition, research, and support services.
- Connect with others: Attend a CDH Action Day event in your community or connect with other CDH families online. Join a support group or connect with others through social media to share your experiences and to find support.
No matter how you choose to observe CDH Action Day, the most important thing is to help raise awareness about this condition and to support families affected by CDH.
Why Congenital Diaphragmatic Hernia Action Day is Important
Congenital Diaphragmatic Hernia (CDH) Action Day is important for several reasons:
- Raising awareness: CDH is a rare and often life-threatening condition, and many people are not aware of its existence or its impact on families. CDH Action Day helps to raise awareness about the condition, its symptoms, and its treatment options.
- Advocacy: CDH Action Day is an opportunity to advocate for increased research funding and better access to care for CDH patients and families. By bringing attention to the condition, CDH advocates can push for policy changes that improve outcomes for those affected by CDH.
- Support: CDH can be a challenging and isolating condition for families. CDH Action Day provides a platform for families to connect with one another, share their experiences, and find support.
- Research: CDH Action Day helps to promote research into the causes and treatment of CDH. By raising funds and awareness for CDH research, CDH advocates can help to drive scientific advances in the field.
Overall, CDH Action Day is important because it helps to shine a spotlight on a condition that is often overlooked, and it provides a platform for CDH advocates to raise awareness, advocate for better care and support, and promote scientific research.