Brennen benefit

BROCTON – The community of Brocton is pulling together to raise money for a young boy and his family. A benefit for 5-year-old Brennen Maddox will be held on Sunday at the Nickel Plate Depot in Brocton.

Brennen has been diagnosed with Hutchinson-Gilford Progeria Syndrome, a fatal genetic condition characterized by accelerated aging. Brennen is one of 114 children in 39 countries living with progeria and is the only known living child in New York state.

The Team Brennen benefit, hosted by the Nickel City Nomads and the Nickel Plate Depot, will be from 12 to 9 p.m., with a spaghetti dinner to be held from noon to 5 p.m. Tickets for the spaghetti dinner will be $10 for adults and $7 for seniors and children under the age of 12.

A motorcycle run will start with registration at 10:30 a.m., with kickstands at noon. Registration, which includes dinner, is $15 for single riders and $25 for double riders. A silent auction, a 50/50 raffle and a raffle for a cooler and grill will also be featured. Live music will be provided by Gina V. and Coaltrain, Derek Davis and The Mockingbirds. The day-long benefit will also have children’s activities including face painting and a bounce house.

Brennen, who will be entering kindergarten in the fall, has been accepted to a clinical drug trial at the children’s hospital in Boston, Mass. He will travel with his family to Boston in mid-July for the clinical trial at the hospital. The trial will pay for expenses for Brennen and one parent and the family has to cover for other family members to attend. Brennen, his mother, Erin Stewart, father Herb Maddox and brother, Owen Maddox will travel to Boston. Previous clinical drug trials have begun to improve the life span of children by one to six years. The proceeds from the benefit will help with travel expenses for Brennen’s family and will go to the Progeria Research Foundation.

Chris Sausaman, an event coordinator, has planned other benefits locally with a group of friends. He said it is natural to contact the group for a benefit in the community.

“We knew progeria is a very rare affliction and there is approximately 200 people in the world at any time with it. Brennen is the only one in New York state that we know of. Knowing Progeria and the family has applied for this drug trial, knowing they would have expenses to go to Boston, we wanted to raise money to make traveling not so tough on their pocketbooks,” Sausaman said.

The village of Brocton will honor Brennen and has declared the week of June 15 as “Brennen Maddox Week.” The village will light the Brocton arches blue, Brennen’s favorite color, for the week. T-shirts and hats featuring a Team Brennen logo will be on sale Sunday. The clothing will feature the Teenage Mutant Ninja Turtles, one of Brennen’s favorite TV shows. A T-shirt contest was held on the Team Brennen’s Facebook page and the winning T-shirt design was voted on by followers of the page.

“Progeria is so rare so there is not a lot of awareness and funding to go for research … it’s just as critical, if not even more so because it is fatal,” Sausaman said.

Monetary donations will be accepted at the benefit. For more information on the Progeria Research Foundation, visit www.progeriaresearch.org.

Comments on this article may be sent to smcdonnell@observertoday.com