Race slated to help fund progeria drug trialWritten by Vicki L. Kroll | | email@example.com
Kaylee Halko has been busy this summer. She:
- Celebrated her fourth birthday July 21;
- Led thousands of fans singing “Take Me Out to the Ball Game” during the seventh-inning stretch at a Toledo Mud Hens game at Fifth Third Field last month;
- Traveled to Children’s Hospital Boston in June to begin the first clinical drug trial for progeria — a rare, fatal disease characterized by accelerated aging caused by a gene mutation; and
- Attended the 2007 progeria reunion in Orlando, Fla., for one week last month with her mom, Marla. Fourteen children were treated to trips to Disney’s Animal Kingdom and Universal Studios thanks to the Sunshine Foundation, a charitable organization that helps seriously ill, physically challenged and abused children 3 to 18.
“Our family is optimistic about the drug trial and excited to be part of it,” said Tim Halko, Kaylee’s dad and UT accountant in the Accounting Department on the Health Science Campus.
Kaylee is one of about 25 children from around the world who will be treated with farnesyltransferase inhibitor (FTI) during the next two years. She takes two pills daily.
Researchers hope FTI will act as a bodyguard, blocking a molecule known as the farnseyl group from attaching to the progerin protein, thereby improving or stopping the disease, according to the Progeria Research Foundation. UCLA investigators found that FTI improved bone density, reduced bone fractures, delayed the onset of the disease, and helped with weight gain in a mouse model of progeria.
There are 45 children in the world with the disease, which has a reported incidence of about one in four million to eight million newborns, according to the Progeria Research Foundation. Signs of progeria include growth failure, loss of body fat and hair, stiff joints, aged-looking skin, hip dislocation, generalized atherosclerosis, heart disease and stroke. Children with progeria die of heart disease at an average age of 13.
So far $1.4 million has been raised for the Progeria Research Foundation to fund the clinical drug trial. Last year, the Halkos raised nearly $40,000 at the Race for Progeria — Kaylee’s Course — and silent auction. It’s anticipated $2 million is needed to fund the study.
The second annual Race for Progeria will take place at 10 a.m. Aug. 4 at Monclova Primary School located at the corner of Monclova and Waterville roads. Cost is $15 for the 5K run/2-mile walk; children 10 and younger are free. Another silent auction will be held.
All proceeds from Kaylee’s Course will go to the Progeria Research Foundation, a nonprofit organization dedicated to discovering treatments and a cure for the disease.
To sign up for the Race for Progeria or to make a donation to the Progeria Research Foundation, go to www.sweetkaylee.com. To volunteer at the event, contact Halko at (419)383-5179 or firstname.lastname@example.org.