So That’s How It’s Done

Readers have asked me repeatedly how foundations to raise awareness of kidney disease are started. You know my story: I developed Chronic Kidney Disease, didn’t understand what my nephrologist was saying so researched the disease, then decided to share my research with others who needs plain talk or reader friendly explanations. Hello, books, the blog, Facebook, Instagram, Twitter, Pinterest, Google Plus, LinkedIn, and my website. But I’m not a foundation; I’m just me doing what I can.

Back to the original question: How do foundations begin? Let’s keep in mind that we’re not talking about the biggies like the National Kidney Foundation here.

Well, remember the AAKP Conference back in June that I keep referring to? You meet a lot of people there. One fellow I met is Scott Burton who started his own kidney awareness foundation. I put the question to him. Ready? Here’s his answer.

How do you sum up 36 years of a constant back and forth struggle? Of a lifetime searching for a reason as hope fades a little more each day? How do you not get sick on this roller coaster called life? Simple answer, you don’t have a choice, so you push forward and try to find some positive in the negative, some hope in the hopeless and, ultimately, just try to live each day a little better than the last and make a positive impact. See, this isn’t a story with a fairytale happy ending, but most stories worth reading (or watching), don’t have fairytale endings; rather, they are stories that are relatable and sometimes left open ended.

This isn’t a guest blog about me or my battle, but rather one introducing the positive that has come from the negatives. That positive comes in the form of The Forever is Tomorrow Foundation which pulls from my background in marketing and video production. It just made sense to try to raise awareness and shed some light on kidney disease in the best way I know how: with real people telling real stories about real experiences in a casual and comfortable format.

That began the journey to today, a journey that began on March 3rd, 2016, when The Forever is Tomorrow Foundation was officially launched. The foundation is committed to raising awareness and shedding light on kidney disease through the creation of video content distributed via the web and social media. With many hopes and plans for the future, we are pushing forward as time and funds are available to create new content and keep things moving.

What I envisioned when setting out and establishing The Forever is Tomorrow Foundation was a resource of media content to both shed light on kidney disease to the general public  – which usually doesn’t give their kidneys a second thought – as well as creating a place for patients to find a little bit of comfort with their own battles. By telling patients’ stories, highlighting struggles and accomplishments, and also highlighting research in the field, we can create a place of inspiration and hope. While we have several video series at various stages of development in the works, our primary focus right now is ramping up our mini-documentary web series as funding allows.

We launched with two Public Service Announcements that went live in May of 2016. These two were centered around the National Kidney Foundation’s statistic, “13 people die every day waiting for a kidney transplant,” with a combined viewership of just over 30,000 views on Facebook & YouTube.

In March of 2017, we launched the first episode of “This is Kidney Disease… This is Life,” which is a web mini-documentary series of patients telling their stories in their own words. To date, four episodes of “This is Kidney Disease… This is Life” have been posted online, with just under 50,000 views spread across Facebook and YouTube.

In the coming months, we will also be releasing the first three episodes of a companion to the patient series, telling living donor stories with more episodes of “This is Kidney Disease… This is Life” to follow later this year. Additionally, we released the first video of what will grow to a regular series highlighting research focused on University of California, San Francisco, & The Kidney Project.

That’s the basic plan and history of The Forever is Tomorrow Foundation, with lots of projects in the works and plans to continue to grow. Everything comes down to funding and continuing to grow our network. We are constantly looking for new patients to highlight in our videos, and building a database of contact info for future episodes. To view our videos and learn more about the organization, follow us on Facebook (www.facebook.com/foreveristomorrowfoundation) & subscribe on YouTube (www.youtube.com/c/TheForeverisTomorrowFoundation).

Thank you, Scott, for explaining the inside workings of starting a foundation to raise awareness for kidney disease. Here’s hoping we get a bunch of readers commenting to tell us they borrowed from your structure to begin such foundations of their own and/or are interested in sharing their stories with  you. Note: The Facebook page has some of the most interesting information on kidney innovations that I’ve read about. Take a look for yourself.

On another note, KidneyX is looking for our input. This is from the email they sent me:

“We seek your feedback on how the KidneyX project can best spur innovation in preventing, diagnosing, and/or treating kidney diseases. While we encourage all relevant comments, we are interested particularly in responses to the following questions. You may respond to some or all of the questions:

  1. What unmet needs – including those related to product development—should KidneyX prize competitions focus on? If you have ideas for more than one topic area/issue, how would you rank them in order of importance? If you are a person living with a kidney disease, what makes these topic areas for product development important?
  2. What assistance or services might HHS and ASN offer to KidneyX prize winners that would encourage the greatest participation from a broad range of innovators?
  3. In what ways might HHS and ASN, through KidneyX, effectively encourage collaboration or cooperation between participants/prize winners while respecting their intellectual property rights?
  4. Particularly for those interested in participating in a KidneyX prize competition but unfamiliar with kidney functions and diseases, what information would you find it most useful for HHS and ASN to share publicly?”

You can submit your comments using the title “KidneyX Project Comment” by their September 14 deadline at:

E-Mail: please send responses to KidneyX@hhs.gov.

Mail: please send mail to
KidneyX c/o Ross Bowling
200 Independence Avenue SW, Room 624D
Washington, D.C., 20201

You don’t need to be a kidney patient to respond; you can also be an innovator.

This is, without a doubt, the most businessish (Love the writer’s license to initiate new words, don’t you?) blog I have posted to date. I hope it was both helpful and interesting to you.

Until next week,

Keep living your life!

The URI to TrackBack this entry is: https://gailraegarwood.wordpress.com/2018/08/27/so-thats-how-its-done/trackback/

RSS feed for comments on this post.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: