Angelman Syndrome Foundation Walk supports a cause close to home

THE WOODLANDS, Texas -- Grab your friends and family and step out for a great cause on Sunday morning, May 19, as the Angelman Syndrome Foundation’s National Walk for the Houston Chapter will return to The Woodlands at Rob Fleming Park in The Village of Creekside Park.

Angelman syndrome is a neurological disorder that is largely misdiagnosed as either autism or cerebral palsy. People with Angelman syndrome are developmentally delayed, have difficulty with balance and walking, sometimes laugh inappropriately and experience seizures. Most individuals with Angelman syndrome cannot speak. They will require care for their entire lives. The walk will raise awareness and encourage further diagnosis of Angelman syndrome.

The prevalence of Angelman syndrome is estimated as 1:15,000 in the population. It occurs equally in males, females and all ethnic groups. A large portion of the Angelman population, especially adults and minorities, remain undiagnosed.

Angelman syndrome was first identified in 1965 by British pediatrician, Dr. Harry Angelman. The genetic marker was identified in 1997. Angelman syndrome is a malfunction of the ubiquitin protein gene, located in the region of the UBE3A gene on the 15th chromosome. The syndrome is of great interest as an example of genetic imprinting.

Research in Angelman syndrome will lead to further breakthroughs in the treatment and understanding of seizures, autism and many other neurological and genetic disorders.

As the Foundation’s biggest source of fundraising for medical research, support, education and advocacy for families affected by Angelman syndrome, annual national walks are held nationwide at 29 metropolitan cities. The Woodlands is in its eighth year.

Debbie Sukin, CEO of St. Luke’s The Woodlands Hospital and St. Luke’s Lakeside Hospital, together with her husband, urologist Dr. Steven Sukin, have an 11-year-old son, Jacob, who was diagnosed with Angelman syndrome when he was just 14 months old. Today, Jacob’s warm smile and wonderful laugh, a typical symptom of the disorder, masks the challenges that this young boy faces every day along with his mom, dad, and younger brother.

“As Steve and I mark our eighth year of promoting the Angelman’s walk in The Woodlands, we hope to again see the tremendous support and participation by the community,” explained Debbie Sukin. “During the past 20 years of research, great strides have been made in advancing support for individuals with Angelman’s and towards finding a cure, but none to date have proven more successful than accomplishments reached during the past year and a half toward discovering a possible treatment. Fundraising is more important than ever before, and we are looking forward to our most successful event yet.”

Dr. Steven Sukin added, “We are honored to host the Houston walk in The Woodlands and share with other families the overwhelming support of our community.”

Through the Sukin’s passionate involvement with the Angelman Syndrome Foundation and its 26-member Houston chapter, they have helped organize the Angelman’s Walk in The Woodlands which raises an average of $50,000 annually. Over 450 participants are expected to turn out to support this year’s walk.

Registration begins at 8 a.m. and the 5K walk steps out at 9 a.m., beginning and ending at Rob Fleming Park in The Village of Creekside Park at 6055 Creekside Forest Drive. Participants are encouraged to register in advance online or can register the day of the event. For more information about the walk, or to provide a sponsorship or in-kind donation, contact Adrienne Foret at (936) 266-4058 or aforet@sleh.com.

For more information about Angelman syndrome, please visit the Angelman Syndrome Foundation website at www.angelman.org.