Goodbye to 2021 – Welcome to 2022 (and a fundraiser)
Dr. Andy tries to raise $5,000 for medical and research support of kids like his son Jukie (happy birthday, Jukie!)
TL;DR: Today is my disabled son Jukie’s 21st birthday, so I am raising money for the Smith-Lemli-Opitz Foundation, and I could use your help. (See the Facebook donation page to see how close I am to reaching my goal of $5,000.)
We are all familiar with walkathons. Devotees to a (typically medical) charity will explain the need, set up a course, and then hope that all the participants will harass their friends into pledging to the cause, either in the form of a lump sum or a dollar amount donation per mile walked.
I’ve been running a low-key walkathon in 2021, and I hope you will participate in helping me raise money for a worthy cause. As you may know, my son and frequent walking partner Jukie has a rare metabolic disorder called Smith-Lemli-Opitz syndrome (or SLO). Individuals with SLO cannot metabolize cholesterol properly, a deficiency that affects every system of their bodies, including brain health and development. SLO has a high mortality rate (80% at or before birth), and the children born with it wrestle with a series of maladies for the entirety of their lives. For example, my son Jukie, who turns 21 on January 4, has cognitive and developmental delays and is non-verbal.
Jukie has participated in research into SLO at both Oregon Health & Science University and at the National Institutes of Health in Washington, D.C. We would take our boy to the ends of the earth to improve his health and quality of life, as well as the lives others like him. Sadly, because SLO is rare, fewer researchers than we would hope actually devote the time and resources necessary to understand this unusual syndrome.
Of course, “treating” SLO is a daily concern in our family. During the pandemic, I was charged with getting our stir-crazy boy out of the house. Not understanding coronavirus, and generally unable to mask, at first Jukie appreciated the domestic Pixar film festival, but soon, he had to venture out. So we started taking long walks, mostly in the afternoons. First we explored the circuit of South Davis greenbelts on which we live, and then eventually we ventured to other neighborhoods. If you were a Davis resident, you would have spotted us on one of these everyday walks.
Because of a medication change at the start of the pandemic, Jukie had put on some extra weight, but a few months of a healthy diet and a regimen of daily, low-impact exercise helped him trim down. Over our last year of walking, Jukie will often slow down, but he has rarely taken a rest. Like most of us during this pandemic, he has just kept going.
In 2020, Jukie joined me for most of my walks. According to my phone, that year I averaged 4.6 miles a day, for a total of 1,679 miles. In 2021, I resolved to walk even farther. Was it 1,500 miles? 1,750? 2,000? How do you think we did? No, really, I want you to guess.
I hereby invite you to pledge to the Smith-Lemli-Opitz Foundation in support of our year-long walkathon in honor of Jukie and others like him and medical research into his syndrome. If you think I walked 2,000 miles this year, and you wanted to pledge a penny a mile, that would be 20 bucks. If you think we averaged five miles a day this year, and wanted to pledge a dollar a daily mile, that would be five bucks. If you wanted pledge a dime for every thousand steps that I averaged in 2021, and if I walked a few more (instead of a lot more) steps this year compared to last, you might end up pledging $12 (for a daily average of 12,000 steps).
A week after Jukie’s birthday of January 4, I will reveal the grand total of miles, average miles, and steps that I walked (and sometimes ran) in 2021, and then invite you to pledge a tax-deductible gift to the SLO Foundation, or to adjust your pledge if your gift represented an underestimation of our 2021 walking prowess.
Because of a pledge of a thousand dollars (!) from one of my favorite author of New York Times bestsellers, and another thousand dollars from a bunch of friends in high school (Hi Jennifer!), I have set a goal of raising $5,000, an outrageous target that we might reach with your help. As you can see from the Facebook fundraiser page, we are currently 93% there!
For this fundraiser, we are also using the Giving Hearts Day giving portal. Gretchen Noah, President and Treasurer of the Smith-Lemli-Opitz Foundation, has already convinced businesses and other organizations to pledge more than $10,000 in matching funds, thus doubling any donations raised through this fundraiser. My wife Kate also volunteers as the Director of Family Support and Communication for the Foundation, so I hear many stories about the families of newly-diagnosed babies – they would benefit significantly from our support.
So please make a donation recognizing Jukie on his 21st birthday. With your help, we could improve the lives of people who are born every day with the rare Smith-Lemli-Opitz Syndrome.
P.S. My next Poetry Night takes place via ZOOM on January 6 at 7 PM. We are featuring the Poet Laureate of Sacramento and a poet from New York (via Kentucky). Great fun! Find the details at http://www.poetryindavis.com.