(BPT) - Mother and rare disease advocate Lora Moore knows all too well the value of good health and how quickly it can slip away. In 2004, she tragically lost her 12 year-old daughter Lyndon to Hereditary Angioedema (HAE), a rare genetic disease characterized by repeated swelling attacks that can occur anywhere in the body such as the limbs, abdomen, face and even the throat, which can be life-threatening. Lora herself suffers from HAE, as does her oldest daughter Hillary. For their family, living in fear of the unpredictable swelling attacks of HAE is a way of life.
Lyndon’s untimely death was devastating to the Moore family, but inspired by the creation of the first-ever internationally recognized annual HAE Day on May 16, 2012, Lora and Hillary turned their grief into action.
“Lyndon had the kindest and most caring heart. She wanted everyone to feel happy,” said Lora. “We knew we had to do something to keep her memory and wonderful spirit alive.”
Beginning in 2012, Lora and Hillary organized an annual memorial walk in their hometown on HAE Day to raise awareness about HAE and honor Lyndon’s memory.
Having no event experience prior, they had little time to prepare for the inaugural memorial walk in 2012. Lora went door to door to local businesses trying to get as many sponsors as she could and also made T-shirts printed with a picture of a butterfly that Lyndon had drawn. As a result of her hard work and dedication, the memorial walk went on without a hitch and around 100 people came out to support the walk and celebrate the first HAE Day, all while raising funds for the U.S. Hereditary Angioedema Association (HAEA).
The next year, Lora enlisted the support of the HAEA to help coordinate the second annual ‘Lyndon Brooke Stidham Memorial Walk’ so that they could make an even bigger impact than the year prior. Not only did they double the number of participants, they raised four times the amount of money as the year prior.
Through their work to organize the walk, Lora and Hillary learned a number of valuable lessons that are applicable to anyone hoping to raise awareness for an important cause. These include:
* Tap relevant local and national organizations for help; they often have valuable experience and resources to leverage
* Use social media to help get the word out and don’t be shy about asking people to “share” the news; this can be a great (and inexpensive) way to raise awareness
* Local businesses are often looking for ways to help out the community; consider approaching them for donations of funds or items to help with your event (e.g., food and beverages or items for raffle prizes) or even to post flyers about your cause
* While organizing an event can be hard work, the rewards are immeasurable
For Lora, the walk provided more than just an opportunity to raise awareness and celebrate Lyndon. It also connected her with many others facing a similar challenge.
“It’s so empowering celebrating HAE Day with other HAE patients. Having a rare disease can sometimes make you feel alone and isolated, so bringing people together who can relate and share stories is incredible,” said Lora.
As for the future of the ‘Lyndon Brooke Stidham Memorial Walk,’ Lora’s dream is to take the memorial walk across America.
“I want to bring this event to people all over the U.S. so that we can continue to raise awareness about HAE across the country,” said Lora.
To learn more about HAE Day, visit www.HAEDay.org. To find a health care professional, visit www.HAEA.org, the official Web site of the U.S. Hereditary Angioedema Association.
This content provided courtesy of Shire.