Oct 2, 2016

A Place for EVERYTHING Stroke and Other TBIs--strokefocus.net

Traumatic brain injury, otherwise known as TBI, is an acute event in which the person is normal one moment, and the next moment life has abruptly changed.

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.

"I came to US in 1997 and earned my MBA from University of Iowa, on full tuition scholarship. I hold a CFA (chartered financial analyst) designation. 

"After graduation, I worked in Sprint 1999-2004 as a Senior Financial Analyst, supervisor, finance manager and later Group Manager. I was involved in almost all major technology investment by Sprint in this period. I am very thankful that Sprint put me in its Financial Management Development Program (FMDP) and rotated me through various divisions with excellent leadership training. This gave me a very broad exposure to different areas in finance and technology.

"In 2004 through 2009, I worked for Wells Fargo Consumer Finance. In Wells, I got the opportunity to lead a large technology team. We turned 4 subpar technology teams into a major power house inside Consumer Finance Division. I really like the experience. It gave me the first hand experience to lead technology teams to support business.

"In 2009, I was recruited by East West Bank to set up its Financial and Planning Department. In 2010, I was assigned to run the MIS division of East Bank. In late 2010, I was promoted to be the IT director (CIO) of the East West Bank. I led the turn around of the East West Bank IT division. 

"East West Bank's IT was a struggling unit with different teams fighting each other over the years. I put them to work together. Realigned their function, established a solid information security process, built up the bank's data warehouse, recruited top development talent to work side by side with the business team and set up its Great China IT operations.

"East West Bank's CEO Dominic Ng said the change was 'more than day and night.' Four days before my stroke, Federal Reserve gave a review of my team in front of my boss, then President Julia Gouw. The comment was the team which used to be a problem, 'is now the example for the district to follow.'

"When I started to recover, my best friend set me up on 2 leading Chinese social media. The Tencent Weibo and Wechat. Both run by the leading Chinese technology giant, Tencent, just to let me kill some time. Weibo means 'microblog' in Chinese. There are a number of microblogs in China. Each is an emulation of Twitter, a leading social media platform.

"I was stunned by its awesome search capability by the microblog. Taking a deep dive into it, I found that social medias are the most powerful information tool. Microblogs like Twitter is one form of social media. 

"There are two types of questions we deal with. Questions that have definitive answers such as the year Thomas Jefferson was born. The year Pearl Harbor was attacked. Then there are questions for which the answers are evolving, such as the latest drug to cure cancer and the latest discovery in neuroscience.

"For the second type of questions, social media is the most powerful search tool available. A user can post a question, then users who are interested in the subject could make comments adding information they know. Then more and more users could add their inputs. Very quickly, users could go very deep into on any subject. To any loosely defined questions, microblog is perfect.

"Another major factor was Alison Shapiro along with Neil Yu. Both were stroke survivors. Both helped me tremendously in my recovery. When I was knocked down by stroke, my wife Hong went online to look for information. She was overwhelmed with thousands of pages of information without knowing where to start. By contrast, Alison and Neil were able to offer very helpful and specific answers to my wife. They could also help my wife shape a very poorly defined question into a well structured conversation. This is exactly like the type of conversation you see on Social media.

"Why can't we have a platform to have conversation like this?

"Moreover, we can organize events and form groups on StrokeFocus. Today, I have no idea what is being discussed in stroke support groups affiliated with Stanford University. Knowing that Stanford leads the stem cell research and has just conducted a large scale clinic trial following a major breakthrough, wouldn't it be nice if we could all join their conversation?


"We would like to see StrokeFocus as a starting point of major changes. Survivors collectively know a lot about stroke and brain injuries. Together, we have a lot of power to make changes.

"There are 8 million survivors in US alone. Each year, there are 750K new survivors added to the list. This is a vast but under developed market.

"To make StrokeFocus successful, a vibrant ecosystem has to evolve around it. I would love to see new form of organizations and companies grow on top of StrokeFocus. There are many problems that are waiting for new institutions to solve. 

"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? 

"StrokeFocus adopts a mall tenant model. We do not believe in the Big Data Hype. We believe collecting user data to make a profit is morally wrong. StrokeFocus does not step into the day to day management of its tenants just like a West Field Mall will never step in to run an Apple Store inside it.

"There are 800 stroke survivor groups registered under National Stroke Association. Most of them lack resources to produce a lot of content. Let's say only half of all groups can make at least 1 video a year. If a group only produces 1 video a year, it will have a real hard time engaging its people. How about we could pool all groups together. 

"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.


5 comments:

Rebecca Dutton said...

I had my stroke in 2004. If I had had it even ten years earlier I would have missed the support and inspiration from the stroke community on-line. I don't want to think of how negatively my recovery would have been without this resource.

Houston Huffard said...

12 years stroke (hemiplegia) survivor.
I had the greatest shock of my life when i had a cardiac arrest 12 years ago and slumped into comma. I was in comma for a year and three months before i was able to open my eyes. I stuttered with speech and and i noticed i could not move the full right side of my body my hands and legs this was when the doctor told me i had stroke (hemiplegia). I was bedridden and kept in a wheel chair when i need to move for 10 years more and it became worse because i started having memory failure i hardly remember anything. The condition was debilitating and even my neurologist could not help me with his several therapy. My wife came in one day with a medicine she got from a herbal doctor she wanted me to start taking that i will be okay, i was reluctant because i had given up already and was waiting for my death day. she talked me into taking it telling me how much she love and cares about me and how she and the kids are gonna miss me. I took the medicine for 3 months as recommended and my condition improved i was able to walk and move those parts affected by the stroke and today i have fully recovered after 12 years of horror. Do not die because of ignorance you too can be well again. just contact him on josephalberteo@gmail.com for more information on about it and how to get his medicine. thanks for allowing me share my story.

Arthur Jaja said...

I had Stroke in 1997,at age of 27 still University by then. It was a life charging experience that you would not wish for you neighbour, but therapy had been my main stay and has led to my near recovery.Listening and reading resources as this has help my emotions and self confidence.Thanks to the administrator of this resources. ARTHUR JAJA NIGERIA

Arthur Jaja said...

This an amazing Resources for Stroke recovery.

Joyce Hoffman said...

You must be a member by now. Congrats!