About us

A founder's story

Most organizations are born out of a story. A story based on personal circumstances. A story showcasing determination and will. A story about changing the world in large and small ways.

Our story begins in November 2017.

At 17 years old, my son Jakob had an amazing life ahead of him. Highly social. He was a top student. He was a leader of the student body. A nationally ranked tennis player playing tournaments around the country and meeting the world’s best players. All these qualities gave Jakob access to amazing opportunities and a path toward an incredible future.

Then out of nowhere, he got sick.

It started with exhaustion and extraordinary weight loss. Then the jaundice kicked in while his beautiful curly hair began to fall out. After that, multiple organ failure—the liver, kidneys, and the bladder. From there, extreme fatigue, chronic pain, severe headaches, and sensory sensitivities.

The world Jakob once knew and thrived in was turned upside down.

Jakob’s final years of high school, an active social life, and an amazing tennis career were replaced with a new routine. Hundreds of doctors’ visits from almost every specialty. Weekends in the ER for IV treatments. And the bonus of complete social isolation at our home or in his bed.

May 18, 2017
July 30, 2018

The physical, mental, and emotional decline took a matter of months. But the odyssey continued into its fourth year, with limited answers and certainly no cure. This journey has certainly taken its toll—on our family, our friends, and of course, Jakob.

Now 21 years old, there have been times when Jakob has told me he can’t go on living like this. What he was really saying was that he wasn’t sure he wanted to live. Always tough and full of grit on the court or in the classroom, this was getting the best of him. He was giving up. As parents, we couldn’t allow him to give up hope and his sense of purpose. We needed him to live on.

Looking for answers, we got smarter on the medical conditions Jakob was facing. We sought information from numerous organizations who were working on the problem. As we became more educated, we discovered there were actually millions of people facing down their sickness. Looking for solutions, we heard numerous stories of other people on their journeys—journeys in some cases taking decades. And, while these individuals faced their own personal hardship, we felt through their guidance an incredible amount of love and support that gave us hope.

LiveOn.org was founded on the principle of paying it forward.

While Jakob still takes on the hurdles of his sickness, he wants others like him to know there’s going to be a better day ahead.

What if we can help someone shorten their four-year journey into four months by simplifying access to the organizations and care providers that have helped us?

What if we could help create interpersonal connections among people who suffer so they can help each other?

What if we could help not just the few, but the millions of people around the world connect through technology?

Help us and the millions of others who are suffering by supporting LiveOn.org’s ambitions.

With warmest regards,

Scott Kempema
CEO | Executive Director

Jakob Kempema
Managing Director | Secretary of the Board

A founder's story

Most organizations are born out of a story. A story based on personal circumstances. A story showcasing determination and will. A story about changing the world in large and small ways.

Our story begins in November 2017.

At 17 years old, my son Jakob had an amazing life ahead of him. Highly social. He was a top student. He was a leader of the student body. A nationally ranked tennis player playing tournaments around the country and meeting the world’s best players. All these qualities gave Jakob access to amazing opportunities and a path toward an incredible future.

Then out of nowhere, he got sick.

It started with exhaustion and extraordinary weight loss. Then the jaundice kicked in while his beautiful curly hair began to fall out. After that, multiple organ failure—the liver, kidneys, and the bladder. From there, extreme fatigue, chronic pain, severe headaches, and sensory sensitivities.

The world Jakob once knew and thrived in was turned upside down.

Jakob’s final years of high school, an active social life, and an amazing tennis career were replaced with a new routine. Hundreds of doctors’ visits from almost every specialty. Weekends in the ER for IV treatments. And the bonus of complete social isolation at our home or in his bed.

May 18, 2017
July 30, 2018

The physical, mental, and emotional decline took a matter of months. But the odyssey continued into its fourth year, with limited answers and certainly no cure. This journey has certainly taken its toll—on our family, our friends, and of course, Jakob.

Now 21 years old, there have been times when Jakob has told me he can’t go on living like this. What he was really saying was that he wasn’t sure he wanted to live. Always tough and full of grit on the court or in the classroom, this was getting the best of him. He was giving up. As parents, we couldn’t allow him to give up hope and his sense of purpose. We needed him to live on.

Looking for answers, we gotsmarter on the medical conditions Jakob was facing. We sought information from numerous organizations who were working on the problem. As we became more educated, we discovered there were actually millions of people facing down their sickness. Looking for solutions, we heard numerous stories of other people on their journeys—journeys in some cases taking decades. And, while these individuals faced their own personal hardship, we felt through their guidance an incredible amount of love and support that gave us hope.

LiveOn.org was founded on the principle of paying it forward.

While Jakob still takes on the hurdles of his sickness, he wants others like him to know there’s going to be a better day ahead.

What if we can help someone shorten their four-year journey into four months by simplifying access to the organizations and care providers that have helped us?

What if we could help create interpersonal connections among people who suffer so they can help each other?

What if we could help not just the few, but the millions of people around the world connect through technology?

Help us and the millions of others who are suffering by supporting LiveOn.org’s ambitions.

With warmest regards,

Scott Kempema
CEO | Executive Director

Jakob Kempema
Managing Director | Secretary of the Board

Board of Directors

Scott Kempema

CEO | Executive Director

I have been a marketer for over thirty years and have been fortunate enough to work with some of world’s most famous brands, including Microsoft, Intel, Verizon, to name just a few while serving on the executive leadership team at McCann Erickson and as CEO at Contravent, a digital marketing and technology development agency. Currently, I’m the Chief Brand Officer at E2open, a global supply chain technology company. My family and I have been personally affected by ME and other chronic post-infection diseases through my son’s current bout, inspiring me to establish and lead LiveOn.org. I’m extremely excited about the prospect of helping millions through our disease awareness efforts and through the communications support from our amazing coalition partners.

Doug Folsom

CFO | Treasurer

For more than 30 years I have served as Chief Financial Officer for six different enterprises ranging in size from start-up to multi-national organizations covering such industries as marketing, manufacturing, and software development. Watching family and loved ones experience the myriad of challenges associated with multisystemic diseases, I view my involvement with LiveOn.org as a way to actually do something about it. In concert with our partners, anything we can do to ease their suffering, provide support, encourage, education, and most importantly – hope, is worth every effort.

Jakob Kempema

Managing Director | Secretary

I have been sick with ME and POTS since November 2017. During this time, my life has completely changed. ME is not something I would wish upon anyone, but there is lots to be done. For the past four years, I have served as a Project Manager and Client Finance Manager for Contravent, a digital marketing and technology development agency. During that time I have worked with some of the world’s greatest companies including Adobe, Avaya, and the American Diabetes Association. The creation of LiveOn.org provides hope and purpose to the over 30 million sufferers around the world. Having the disease, myself, I know what it’s like to lose friends, loved ones, and the overall feeling of self-isolation. I am here to help those in need find their new beginning and to work with medical organizations to find a better tomorrow.

Dave Swensen

CTO | Technology Innovation

I have been working in technology for over 25 years as a developer, an analyst, and most recently as the Chief Technology Officer at Sorenson Communications. I have worked with many of the world’s largest companies on innumerable technology assignments in line with the concerns of our organization. LiveOn.org has become an incredibly important mission. My wife suffers from EDS and other dysautonomic conditions. Over the last several years, I witnessed the devastating impact of chronic illness. After almost losing my wife, a former triathlete, to the invisible enemies, we as a team, continue to battle the painful and the heart-wrenching challenges of these diseases together. LiveOn.org has created a new profound passion for both of us. Beyond helping my wife we are committed to using innovative technology to help others as they struggle through their own trials.

Matt Cook

Legal Counsel | Compliance

I have been corporate attorney for over fifteen years advising clients on a broad range of business issues, including incorporating and structuring nonprofits and advising them as to operational and compliance issues. I regularly advise boards of directors on their roles and duties and have regularly served on nonprofit boards of directors to give back to the community and the causes I believe in. When I am not working or spending time with family, my passion is emotional health and well-being. I am excited and looking forward to helping those with ME and other chronic diseases explore alternative options for healing and mitigation of their disease where traditional physical medicine isn’t equipped to provide relief and has run out of options.

Christina Jepsen

Legal Counsel | Ethics, Diversity, Equality, and Inclusion

I have been an employment law attorney for over twenty-five years and have taught as an adjunct professor at the University of Utah S.J. Quinney College of law. In addition to my role as attorney I am also the Director of Diversity Equity & Inclusion at my firm. In this role, I work to address the lack of diversity in the legal community. More importantly, my husband and I have four daughters who keep us on our toes. When I am not busy with law or mom duties, I love to help the community. I hope I can bring my experience with law and DEI to help LiveOn.org fight for the sufferers of ME and other chronic diseases.

Board of Advisors

Linda Tannenbaum

Founder | CEO
Open Medicine Foundation

Oved Amitay

CEO
Solve M.E.

Linda Giampa

Executive Director
Bay Area Lyme Foundation

Rebecca Gluck

Community Education Director
Ehlers Danlos Society

Dan Davis

Stiry Founder | CEO
Chronically ill

Moka Best

Life Coach
Chroncially ill

Annie Phillips

Community Manager
Chronically ill

Do today by donating today

There are millions of people suffering from chronic illnesses and associated emotional wellness issues. Help us raise the overall consciousness of these diseases.