Angels in The Woodlands: Walk to raise funds, awareness of rare neuro-genetic disorder

THE WOODLANDS, Texas – With each step, the Angelman Syndrome Foundation hopes to get closer to a cure.

You can help by participating in the Foundation's annual walk Saturday May 20 at Rob Fleming Park in Creekside.

Symptoms of the rare neuro-genetic disorder include developmental delays, difficulty with walking, balance and speech, and seizures. There is currently no cure, and it requires life-long care.

"Receiving the diagnosis is devastating, " said Debbie Sukin, 2017 walk coordinator and a resident of The Woodlands. "You go through mourning. You mourn the loss of a typical child that does typical things – but then you rise to the occasion and realize you can still celebrate milestones. They're just different milestones. You gain a new appreciation for the milestones they achieve on their time and on their terms. Every time my child picks up a fork or drinks from a glass by himself, we celebrate."

Difficult to diagnose

Angelman syndrome is often misdiagnosed as cerebral palsy or autism.

"We knew something was wrong fairly early on," said Sukin of her son Jacob, now 15. "It took a good six months before we received the diagnosis. But we are lucky we live here in Houston, or it may have taken longer. I've seen the difference early intervention and access to programs can make."

Houston is home to the Jan and Duncan Neurological Research Institute at Texas Children's Hospital, and research into the disorder is currently underway at Baylor College of Medicine.

The Angelman Syndrome Foundation is hoping to establish an Angelman Syndrome Clinic in Houston that will provide access to geneticists, neurologists, psychiatrists, psychologists, genetic counselors, social workers and more, all in one setting.

Clinics currently exist in Boston, MA; Rochester, MN; and Chapel Hill, NC.

Angels in The Woodlands

This is the 11th year The Woodlands is hosting the Houston-area walk, one of 18 cities nationwide that all participate on the same day.

"The walk is all about celebrating our Angels and their abilities," Sukin said. "It's a day to recognize their incredible spirit and their families' hope; all of the things we work so hard for, to make their lives the very best they can be."

Sukin said approximately 500 Angels, parents, caregivers, friends and family members participate in The Woodlands walk each year, raising between $50,000 - $75,000.

Funds go directly to ASF, a national nonprofit organization that raises awareness and treatment of Angelman syndrome through education, information, support and research.

"We bring everybody together," Sukin said, "and celebrate our Angels with the community."

Want to go?

What: 2017 Angelman Syndrome Foundation Walk

When: Saturday May 20

Where: Rob Fleming Park, 6055 Creekside Forest Drive, The Woodlands

For more information, visit www.angleman.org.