Health & Wellness

Morristown Children’s Hospital First Hospital in New Jersey to Administer Newly Approved Treatment for Rare Genetic Disease

934362f2bd6cead66cf6_78068d1266cf2ea46606_15492512_1656562074369476_3219548243244688414_n.jpg
934362f2bd6cead66cf6_78068d1266cf2ea46606_15492512_1656562074369476_3219548243244688414_n.jpg

MORRISTOWN, NJ – Goryeb Children’s Hospital at Morristown Medical Center, part of Atlantic Health System, was the first hospital in the state to administer nusinersen, a newly approved medication to a patient with spinal muscular atrophy (SMA), a rare and sometimes fatal genetic disease that causes progressive loss of muscle strength and movement.

Because of the demand for the product among the SMA community, nusinersen was approved by the U.S. Food and Drug Administration via Priority Review process on December 23, 2016, and administered to 17-year-old Griffen Kingkiner of Montgomery in early February. The medication is designed to improve motor function and slow its decline.

“When the medication was approved on December 23rd, 2016, at 4:51 PM, the entire SMA community breathed a collective sigh of relief, but it soon became apparent that hospitals were not ready to treat patients,” said Beth Kingkiner, Griffen’s mother. “The team at Morristown Medical Center and Goryeb Children’s Hospital were able to bring all the departments and organizations together and provide this treatment to Griffen. We were prepared to travel to another state for treatment, but knowing this facility was 40 minutes from home was a happy surprise.” 

Sign Up for E-News

Dr. Jahannaz Dastgir, medical director of the newly launched Pediatric Neuromuscular Medicine Program at Goryeb Children’s Hospital was an investigator on the clinical trials that helped the medication become approved.

“Helping patients like Griffen is the reason I do the work I do—the thought that new medications can actually help save or improve motor skills is astounding to me,” said Dastgir. “I am proud to have played a part in Griffen’s treatment, and know it is supplemented with the comprehensive care team in place at Goryeb Children’s Hospital to assist the needs of our pediatric patients with SMA and other neurological diseases and disorders.”

Griffen will attend college in the fall, and hopes to study medicine or computer science.

“Griffen hasn't been sitting on the sidelines waiting for a treatment—he's been living his life,” said Beth. “His academic accomplishments are many but what stands out most to me is the resilient, persistent, driven and focused young man I have had the privilege to watch him become.”

Specialty services for children with neurological and neuromuscular disorders and diseases are available through Atlantic Children’s Health and include services for:

·         Autism and development – Goryeb Autism and Development Center (GADC)

·         Brain and spinal tumors – Goryeb Neuro-Oncology Program (GNOP)

·         Concussion – Goryeb Concussion Program (GCP)

·         Epilepsy – Goryeb Epilepsy Program (GEP)

·         Headache and Migraine – Goryeb Headache Program (GHP)

·         Muscle and Nerve diseases – Goryeb Neuromuscular Program (GNP)

·         All general neurology problems

For more information and complete list of locations, visit: http://atlantichealth.org/goryeb/our-services/pediatric-neurology.html.

TAP Into Another Town's News:

You May Also Be Interested In

Sign Up for E-News

Madison

Morris Democrats Honor Democratic Mayors

July 16, 2018

MOUNNTAIN LAKES – Madison Democrats celebrated the results of the June 5 primary at the Morris County Democratic Committee’s 2018 Mayor’s Ball held on Thursday, June 21, at the Zeris Inn in Mountain Lakes.  The Mayor’s Ball honored the six Morris County Democratic elected mayors, including Madison’s own Mayor Bob Conley.

The primary election featured strongly ...

AtlantiCast

AtlantiCast: Episode 18

On this week’s AtlantiCast, you’ll find out how accessing care at Atlantic Health System is now easier, more affordable and closer to home than ever, learn which item from the produce aisle could be the newest weapon against cancer, see what Atlantic Health System, the New York Times and Instagram all have in common and much more.

 

 

5 Simple Ways to Save Water this Summer

According to the L.A. Times, the average American uses an estimated 98 gallons of water EACH day.  

Here are five simple ways you can save water, to help you conserve water this summer and take some pressure off of your drains.

1. Unless you are using it, turn the faucet off. How many of us still leave the water running while we shave or brush our teeth?According to ...