This is Daniel Gu’s story. He is a stroke survivor and suffered a TBI. I’ll tell you how to join StrokeFocus, Daniel’s ingenious website, after you read his story. Here it is:
“In Sept 2012, when my career and family were going great, an unexpected brain stem stroke derailed my whole life. Within 3 minutes, my left side was paralyzed. Later, I learned that doctors warned my wife that I might never stand up or talk again.
“In our darkest moment, 2 survivors completely changed our lives. One was Neil Yu. Neil is a very senior tax expert. Earlier that year, he suffered a brain stem stroke and was healed largely by acupuncture. He came from my hometown. We had some mutual friends. Neil not only came to hospital to see me, but also connected me with Dr. Sun, his wonderful acupuncturist. My recovery owes a lot to Dr Sun.
“Another stroke survivor was Alison Shapiro. Alison is an accomplished professional. In 2002, she suffered 2 debilitating brainstem strokes at the age of 55. Not only has Alison recovered herself, but also in 2005, she started a program to teach survivors, families and caregivers.
“I found Alison online. The very next day, she responded: How may I help? I was overjoyed. One thing led to another. In the following 2 years, Alison coached me through many difficult situations. We beat the worst prognosis by doctors. Without Alison, the recovery would be unthinkable.
“It was Aug 2014. Alison and I were trying a new online video chat program, and this was the first time we met face to face. As we talked, we found that although almost every survivor would benefit greatly from the kind of support Alison gave me, and there are many survivors would love to do that, there was simply not an easy way to connect survivors.
“My wife Hong and I decided to look for something that would help. Also, as my recovery continued, my best friends set me up on a number of social medias so I could stay in touch. I was stunned by the awesome power of social media to obtain answers for even very poorly defined questions.
“One night, my friend Jeff, an accomplished web entrepreneur, came to see us. He listened to me carefully and recommended that we look into social media. We investigated Facebook, Google Plus, Ning and finally decided to build a social media dedicated to survivors by ourselves.
“We failed and failed. In the 24 months after that, we tried numerous paths. Alison and the team laid down a few principles:
It has to serve stroke survivors and the loved ones;
It has to be very high quality;
Easy to navigate;
It has to have a good mobile app;
Never rush. Go slowly and quality first.
“We decided that the information services should be free to survivors, families, volunteers, professionals and caregivers. We studied sites built for patients, and decided that we will never collect anyone’s medical info, or even birthday and family address. We do not believe that we are in Big Data business.
“There are hundreds of Web sites, and blogs that support stroke survivors. StrokeFocus is not in competition with any one. Our success is measured by how much we can help each group or web site become more successful. Tell us what we can do to help you. Your success defines ours.
“When StrokeFocus started, the partners were trying hard to find a name. At that time, my little girl Alexis got sick. One morning, she got up and walked to my wife, Hong, busy with laundry and said: ‘Mama, Wo Hao La. In Mandarin, it means Mom, I am well now.’ I shared this story with one of the advisers.
“That is the name!” she exclaimed. Alison and Hong liked it, too. [The name was changed to StrokeFocus because people had difficulty pronouncing Wohaula]
“At the beginning, we decided that one of StrokeFocus’ core missions is to help local survivor groups become more effective. Encouraged by Alison, I have been working with local groups. I got in touch with at least 10 since the mid of 2015. In attending their meetings and discussions, I have learned a lot about the challenges they face. StrokeFocus is designed with local groups and stroke survivors in mind.
“Easy use is paramount. We want to provide a tool that helps all survivors to grow. We believe that StrokeFocus’ most important stake holders are survivors, families and everyone affected by brain injuries.
“We want StrokeFocus to become a place where rules, features and functions are driven by users. We want you to not only use StrokeFocus but also provide feedback to improve StrokeFocus. All services currently available on StrokeFocus will remain free. StrokeFocus will continue to add new features and functions based on user suggestions.
“Together, stroke survivors have power. We can change how stroke care is delivered and recovery outcomes of other survivors. We have a lot to teach one another.
“We want to see that service provided by StrokeFocus will accelerate new changes to help brain injury survivors. New forms of organization will grow out of our groups to advocate better care for survivors. New entrepreneurs or clinics serving brain injury survivors will flourish. Researchers will have much better access to people they are finding cure for.
“For example, why can’t we have new types of media companies to generate podcasts [StrokeFocus has them now], since most survivors have visual challenges and audio would be a much better way to consume information. To take StrokeFocus to the next level, we need third party institutions to provide trustworthy reviews on doctors and professionals.
“We would love to see StrokeFocus provide a platform to enable new companies to collaborate closely with survivors and families to develop products and services. We would like to see new digital magazines and news company to curate information for StrokeFocus users. What about new form of non profit organizations to advance causes for StrokeFocus members?
“Without spending a penny, they would have access to hundreds of new videos each year. And survivors can check out activities taking place in other groups. Connect with survivors in other parts of the world. They could have discussion 24/7 without spending a penny. Think what it would do to change stroke care.”
To join StrokeFocus, follow these steps.
- Type strokefocus.net in your search bar and press the Enter or Return key.
- Enter your required information and a chosen password in the spaces provided.
- You made it! Check out the Tutorial tab first to orient yourself to StrokeFocus.
Like I said in the title, “Everything Stroke and Other TBIs” is here, thanks to Daniel, the amazing founder of StrokeFocus.
Join–stroke survivors, other TBI survivors, family and friends, caregivers, health professionals–and we’ll work together to make this site extraordinary to all who suffer from TBIs by giving you education, inspiration, and motivation.
Kudos, Daniel. We are grateful to you.