Sepsis Alliance Newsletter - December 2010
Site Relaunch, Lucy and Ellie’s Challenge, Sepsis: Emergency – and More!
Welcome to Sepsis Alliance’s end-of-year newsletter. This past year was a big one for SA, with among many other things, a relaunch of our website, the introduction of Sepsis Alliance on social media including Facebook, Twitter, YouTube, and LinkedIn, a national survey on sepsis awareness with Harris Interactive, the Merinoff Symposium on sepsis, generous grants from Siemens Healthcare Diagnostics and Edwards Lifesciences, new pro bono partnerships with law firms Akin Gump and Saperstein and Crowell, and the design firm Crown Advertising, initiation of educational offerings for the public and medical professionals, and increasing overall recognition for our work from the general public and major players in the sepsis world.
Contents:
- Sepsis Alliance Community
- Sepsis Alliance Website
- Lucy and Ellie’s Challenge
- Sepsis: Emergency (video)
- Behind the Scenes at Sepsis Alliance
- Coming in 2011
Sepsis Alliance Community
We’re honored that you’ve taken the time to be part of our community. We have such a varied group of people who believe in us or who have discovered us through their searches.
Relatives and friends of someone who is fighting the sepsis battle. Sepsis Alliance receives many visits from people who are searching for information about sepsis because someone they care about is going through it at that time. They look for information on what sepsis is and look for hope.
Some connect with our founder, Dr. Carl Flatley, who offers support by listening to them and sharing his own story of not only his daughter Erin, but how he recognized and survived his own battle with sepsis.
People who have survived sepsis. Many of our website and Facebook visitors have survived their battle with sepsis or love someone who has. Survivors make up an interesting portion of our supporters because they know what it is like. They know and understand what it’s like to be so ill and, for those left with lasting effects, they also know the drastic life-changing experience sepsis can be. As we build our community, survivors can get support from each other. By educating people about sepsis, their contributions are invaluable.
Those who have lost someone to sepsis. Sadly, many people who visit SA or ask for help are those who have lost someone dear to them to sepsis. The majority of them had never heard of the disease before and are shocked when they learn what sepsis is and what may have been prevented. To them, the growing SA community offers its support.
Healthcare professionals. While it may seem that nurses, doctors, and other healthcare professionals should already know all about sepsis, the fact is that many don’t. Dr. Flatley, himself, had never heard of sepsis, despite working in dentistry for over 25 years. For them, SA offers a place where healthcare professionals can come and learn about SA from the patients themselves (a very different point of view than from the medical community), as well as learn about how to recognize sepsis more effectively. Soon, there will be sections of the site that will provide them with resources to further their education.
Interested people. Some people who visit SA haven’t personally been touched by sepsis but they have heard of it somehow. Whether it’s through a mention on the television show Grey’s Anatomy or through a news report, the word “sepsis” has stuck in their mind. To them, SA offers an opportunity to learn about what it is and how it can be prevented.
Donors. As a non-profit organization, SA relies on gifts from individuals, corporations, and other organizations. Whether the funds come in the form of a grant or as a result of someone donating in a loved one’s memory, each and every bit of help is appreciated. By following SA’s progress, donors can see what we are doing with your gifts.
Sepsis Alliance Website
The Sepsis Alliance website underwent a major overhaul in 2010. In August, we relaunched not only our new look, but our new offerings too.
Definition and glossary. We have information on the definition of sepsis and an accompanying glossary of terms, to help people interpret some of the medical language that may confuse them. You will find links to these words throughout the website so you can just click on the word to learn more. If you have any words you would like added to the glossary, simply fill in the feedback form and let us know. Don’t forget, if there’s a word that you don’t understand, there’s a very high chance that others don’t understand it either.
Videos. Videos are available in the Video Library on the SA website and on our YouTube channel. You will find videos produced by others, on YouTube, which discuss sepsis and there are videos produced for SA. By having a library of videos, we are providing another way of learning to our visitors. Some people like to read, other people like to see and hear. Often, by watching a video, information has a stronger impact. If you come across any videos that you feel would be a good fit for SA, please let us know!
Faces of Sepsis. This is one of our most popular sections. Many people visit the SA site to read about real people – not just the abstract “what is sepsis” – but about people who have developed it. The Faces of Sepsis stories are of real, every day people who have chosen to share their story with us. Some are inspiring, some are sad, but they all bring with them the same message: sepsis is dangerous, sepsis can –and often is – fatal. We have to do something to educate people about it. We continue to add to the Faces of Sepsis library – so if you have lived through the disease or know someone who has had it, please consider sharing your story. We need to keep putting faces to the disease.
News and events. Part of SA’s website is dedicated to listing news stories that discuss sepsis. We list the latest updates, as well as articles about people who developed sepsis, from the celebrities, including UK singer Lily Allen, to the general public. Each story is important. If you have a news tip to share, please feel free to send it along.
Forums. As part of the relaunch, SA has developed community forums where people may go and discuss various issues involving sepsis. Have you visited the forums? As our community grows, people will share their stories and offer support to each other. SA staff also checks in and contributes as well.
Lucy and Ellie’s Challenge.
What could be more precious than two seven-year-olds trying to raise money and awareness for Sepsis Alliance?
At the end of November, Lucy O’Brien and Ellie Kessinger of Columbus, Ohio, celebrated their seventh birthday by asking people to donate to SA instead of bringing them presents. Their wish led to Lucy and Ellie’s Challenge, which is to raise $1000 for SA by the end of 2010. The girls also appeared on TV to help spread the word about their challenge. You can watch the girls as they appeared on NBC. If you would like to donate, you may click here to go directly to the donate page. Every little bit will help them meet their goal!
Sepsis: Emergency
The video, Sepsis: Emergency, was produced for SA with the help of an unrestricted educational grant from Siemens Healthcare Diagnostics. The 12 minute video was several months in the making but the result has been worth it.
Through the video, viewers learn what sepsis is and gets to meet Dr. Carl Flatley, the founder of SA, Jen Ludwin, a sepsis survivor, Dr. James O’Brien, a critical care physician, and Dr. Kevin Tracey, President of The Feinstein Institute for Medical Research and author of Fatal Sequence, the Killer Within, a book about how Dr. Tracey became so involved in sepsis research.
This video is available for viewing on the site and is also available on DVD. SA encourages people to request the DVD so they may show it to others who may be interested in learning more about sepsis and SA.
There is also a shorter, two-minute video trailer to give people an idea of what the entire video is about. Please feel free to share it with anyone you feel may like to see it. You can find the video on the SA YouTube channel.
Behind the Scenes of Sepsis Alliance
Who is behind Sepsis Alliance? It’s a small but dedicated team of people who have different reasons for becoming involved in this cause. Here are just two of these dedicated people:
Dr. Carl Flatley, DDS, MSD, founded SA after he lost his 23-year-old daughter, Erin, to sepsis. Now a tireless advocate for sepsis awareness, he spends his days (and nights) speaking to people who have been touched by sepsis and the movers and shakers in sepsis research.
Dr. James O’Brien, MD, MSc, is an intensive care physician at The Ohio State University, who also participates in patient-oriented research. He became involved in SA after reaching out to Dr. Flatley. Dr. O’Brien had found himself increasingly frustrated at the number of patients who were dying of sepsis, but he had no explanations for their families. Dr. O’Brien is involved as a board member and is an invaluable member of the team.
There are many others working hard to keep the organization on course and the website up and running. From numbers to words, everyone’s input is appreciated and much needed.
Coming in 2011
So, what’s in store for SA in 2011? We’re working on fundraising initiatives, so SA can provide more educational material to drive sepsis awareness.
We’re working on forming strong, supportive community networks, where members of the general public will feel comfortable visiting and joining in on conversations, sharing a bond with others who have walked in their shoes – or alongside them.
We’ll have more awareness campaigns, such as buttons people can wear, sharing their concern about sepsis.
We would also like to invite you to help join the fight against sepsis. Whether you share our news with others to help spread the word, volunteer with us or local events, or help raise funds through local fundraisers, you would be helping.