Photo by Andrew Ottoson
Grangeville senior Addie Lutz holds Oakley Smith, a family friend and local 4-year-old afflicted with the motor neuron disease SMA.
As of Tuesday, August 26, 2014
GRANGEVILLE — Two years ago, Harvard researchers found a link between two motor neuron diseases: Lou Gehrig’s disease (ALS) — and spinal muscular atrophy (SMA), which threatens the life of tiny Oakley Smith.
The “Ice Bucket Challenge” viral video campaign has reportedly raised $23 million during its first three weeks and has raised $65 million during the most recent seven days.
The lead scientist behind the Harvard study said SMA and ALS both arise from a mutation in a single protein. And more importantly, for Oakley, she added: “This common pathway may mean common treatment and resources.”
Locally, Grangeville High School senior Addie Lutz, a long time family friend of the Smiths, has poured hours, far exceeding the school project requirements into organizing an event to benefit Families of Spinal Muscular Atrophy on Oakley’s behalf.
FSMA, a non-profit that has provided toys for Oakley and helps SMA victims raise money and awareness, is “funding a drug program with a chance of cross-over between ALS and SMA later downstream in the muscles,” per its website.
Last Thursday, Aug. 26, Lutz said about 40 had registered for the race; her goal is to raise $2,500 for FSMA, with proceeds from the race combined with the raffle immediately afterward.
The Lewiston Tribune dedicated about two-thirds of its Aug. 25 front page to telling Oakley’s story. [Ed.’s note: When spelling her name during the Free Press interview, Oakley spoke happily, with a confident, whip-smart cadence.]
In planning the Flamingo Fun Run — named for Oakley’s favorite animal — Lutz spoke to local elected officials, appeared before the Grangeville City Council and arranged an uncounted number of meetings with local business leaders.
While praising her on-court skills in an unrelated interview, GHS volleyball coach, Kelcey Edwards, remarked on how much her leadership skills have grown this off-season.
At the outset, Lutz aimed to have 100 people to turn out for the run.
The event will be held at Lions Park and on the Grangeville truck route Sept. 20.
The cost to enter is $15, and commemorative T-shirts will be guaranteed for those who register by Sept. 4.
Runners will sign in at 7:30 a.m. that day and the race will begin at 8:30 a.m..
Details and web-based forms are online at http://flamingofunrun.com.