Before Rosemary and I created the Fatty Liver Foundation I never gave much thought to the non-profit community. We always contributed a token to some big name organization with lots of slick ads and thought little more about it. Rosemary would respond to food banks and a few other local groups from time to time but I couldn't be bothered.
God appears to have a strange sense of humor as I find myself in this "old man" stage of my life running one of the newer small non-profit patient support groups and I often think about how little I cared for the less fortunate among us as a younger man. I don't think I lacked empathy but I just didn't know what life was like for those who fall into the darkness of chronic illness and then retreat from the tumult of "normal" life.
I get a lot of advice about raising money and getting donations. The year end appeal for tax deductions is big right now. There is an industry devoted to hustling the tax angle. Since we don't have anything to "sell", we do live or die depending on whether we get donations, but I've never become comfortable asking our members for donations. So many people who find a home here face real hardship themselves and are the very people we hope to help in some small way so it seems awkward to me to send fund raising appeals to our members.
The fund raising formula, as described to me by "experts" is to highlight our contacts and accomplishments and to craft an emotional appeal that tugs on people's hearts. My problem is that what I'm most proud of is that we help people die. We work hard to help them not actually do that just yet but ultimately the piper will be paid by all of us.
It would be more accurate to say we help people who help people die. In this electronic world we live in there is a group known as "lurkers". That sounds kind of negative but for us it is a badge of honor to know that we have many lurkers. A lurker is someone who joins a group and reads the material and is part of the peer to peer community but never contributes. If you are in the business of selling something that is a bad thing. We love our lurkers.
Many of our thousands of lurkers are caregivers in reality. They are with us to learn about what their loved one is facing or what to expect. They don't speak out very often but I frequently receive private messages thanking me for what we do. It is frequently after the death of their loved one as part of their grieving. A small thing in the big picture but I love my lurkers. Not very useful for fund raising but I do see it as among our best accomplishments.
They tell me it is important for me to do this tax time appeal so here it is. If you feel that you can support our efforts just click on the button below. However, if you are a patient and it would be a challenge for you, don't click the button. We welcome your participation in our community and there is no ticket price to belong.
If you know someone who might benefit from learning about us or who you think might be supportive please feel free to forward this to them. Here are some links to information that might be of value as an introduction to the foundation.
Our SUNN Study (Screening for Undiagnosed NAFLD and NASH) report has been published and is now live on PLOS ONE, an international, peer-reviewed, open-access, online science publication. You can read it by clicking the link below.
Screening for undiagnosed non-alcoholic fatty liver disease (NAFLD) and non-alcoholic steatohepatitis (NASH): a population-based risk factor assessment using vibration controlled transient elastography (VCTE)
I recently offered testimony to the FDA as part of a patient panel speaking to them about our concerns. Here is a link if issues around drug development for NAFLD/NASH are of interest.
The Fatty Liver Foundation has launched a public private partnership fund with the long-term goal of screening a million asymptomatic, undiagnosed individuals a year for nonalcoholic fatty liver disease (NAFLD). The SUNN Study was the pilot for that effort. The next step is SUNN-2 with a goal of screening 20,000 people
If you would like more information click the image below.
This fund will provide a mechanism for public and private funders to join together in common cause with the patient community. By joining together we can work with local communities in finding ways to engage this threat at the only truly effective level, that of the patient within the life that they lead and the reality of their community.
We hope you are happy and safe in this very unusual holiday season.