PeopleAgainst Leigh Syndrome’s (PALS) fifth annual fundraiser – Viva la Vida! – broke both attendance and fundraising records recently during a sold-out fiesta at Saint Arnold Brewing Company.
Chaired by Elizabeth and James Elder, more than 280 people raised more than $150,000 to support projects aimed at finding viable treatments and ultimately a cure for Leigh syndrome, a genetic neurometobolic disorder that can cause deterioration of the central nervous system, including the brain, spinal cord, and optic nerve.
One such initiative is TRiaLS: The International Registry for Leigh Syndrome. Funded by PALS and managed by Dr. Mary Kay Koenig’s team at the UTHealth Mitochondrial Center of Excellence, TRiaLS is a highly secure database that quickly connects patients to clinicians and researchers seeking treatments and cures for Leigh syndrome.
While guests dined on fajitas and enjoyed Saint Arnold brews, Elizabeth Elder shared her family’s journey with two children with Leigh syndrome and the impact philanthropy can have on medical research and advances in medicine.
“In May 2015, we finally got the answer to why our two older children, Annabelle and Blair, couldn’t sit up on their own or feed themselves. It was Leigh syndrome.” said Elder. “Although Leigh syndrome is characterized as a fatal disease, our children have benefited greatly from medical research that has advanced very rapidly.”
“In just a few short years, we went from stumped medical experts, to a complete dissection of the kids’ genetic code, to a diagnosis, and now a trial drug that has greatly improved Annabelle and Blair’s symptoms. These great strides in medicine are possible in part to donors who support organizations like PALS and the UTHealth Mitochondrial Center of Excellence who are actively working toward finding a cure.”
Elder’s sincere and heartfelt testimony about her family led into one of the most powerful moments of the night, a live auction that included “Paddles Up” to show support of the 107+ children on TRiaLS. Nearly $35,000 was raised in the live auction.
“Viva la Vida! was truly a spectacular night,” said Lori Martin, founder and Board President of PALS. “To see a room packed with sponsors and supporters who genuinely want to make a difference in the lives of children with Leigh syndrome, including our son Will, was both inspiring and humbling.”