Health & Wellness

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

9b89625dc1d9cc82933a_19f15d28f38c11b1cf20_c7714b5086dfdd51d2a2_15492512_1656562074369476_3219548243244688414_n.jpg
9b89625dc1d9cc82933a_19f15d28f38c11b1cf20_c7714b5086dfdd51d2a2_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

Bloomfield

Pilch Street Pedestrian Bridge over Parkway in Bloomfield to Close this Summer for Repairs

June 20, 2018

BLOOMFIELD, NJ - Residents in the area around the Pilch Street Bridge over the Garden State Parkway will have to find a new place to watch the July 3 fireworks at Brookdale Park as the bridge will close for repairs starting Monday June 25. 

 Extensive improvements to the Pilch Street Pedestrian Bridge over the Garden State Parkway near exit 151 will start next week. The project is ...

Teen-involved Crashes Kill 10 People a Day Between Now and Labor Day

FLORHAM PARK, NJ - More than 1,050 people were killed in crashes involving a teen driver during the, the period between Memorial Day and Labor Day in 2016. AAA reports that the average of 10 people per day is a 14 percent increase compared to the rest of the year.

As school lets out for the summer, AAA stresses the importance of preparing and educating inexperienced teen drivers for ...

Upcoming Events

Carousel_image_d7070322e7be4f998db8_mountainside_logo_lockup

Wed, June 20, 7:00 PM

Hospital Conference Room 2 (Ground Floor), Glen Ridge

Becoming a Parent

Health & Wellness

Carousel_image_8c947cb5aa54e723a2cd_mountainside_bariatrics

Wed, June 20, 7:00 PM

Mountainside Medical Center, Glen Ridge

Bariatric Seminar-Weight Loss That Works

Health & Wellness

Carousel_image_b4f18dfd4f07fd561026_letslisten7-ellington-mplspecs-revised

Fri, June 22, 6:00 PM

Montclair Public Library Auditorium, Montclair

Let's Listen to Jazz

Arts & Entertainment

Carousel_image_984ecc3b936a1ba5ae0c_kingsland_manor_nutley_nj

Sat, June 23, 10:00 AM

Kingsland Manor, Nutley

Floral Design Class at Kingsland Manor Nutley

Education Home & Garden

Carousel_image_5e177eaae57739064cd4_397f63ad2fb50392a776_29178074_2107642336134787_2638697507160326144_n

Sun, June 24, 11:00 AM

Totowa

MakerFest 2018

Education

Carousel_image_ce51c1baeec53a8dcdfb_st_huberts_logo

Mon, June 25, 9:00 AM

Madison

Kids' Critter Camp

Education

Carousel_image_84a90ab7ab886a6c6979_lbi_sosc_june_25_2018_02

Mon, June 25, 9:00 AM

Anthony Santomauro, North Caldwell

Legends Baseball “School’s Out Baseball Camp”

Education Health & Wellness Other Sports

Bloomfield Police Department Blotter June 4 to June 10, 2018

June 13, 2018

BLOOMFIELD, NJ - The following police blotter has been issued by Lt. Anthony Sisco of the Bloomfield Police Department.

Shoplifting:

6/6/18- Officers were dispatched to 351 Broad Street (Quick Check) on a report of a Shoplifting. An employee observed an unknown African American male wearing a beige shirt and carrying a black bag. The suspect placed dessert items into that black ...

Newark students share books and hope with Puerto Rican kids

June 20, 2018

NEWARK, NJ - For Naomi Salazar, a second-grader at South 17th Street Elementary School in Newark, reading isn't just fundamental, it's a foundation of hope. 

"I feel sad that they don't have any books to read, and I want to share my books so they can read them," 8-year-old Naomi said. She and her school are involved in a program to provide books to ...

McGovern's summer renovation closing party celebrates change

It always takes a few seconds for your eyes to adjust when you walk into McGovern's Tavern in Newark, a downtown fixture since 1936.

But this Friday afternoon, there were two immediate sights that demonstrated something was different.

First, most of the photos, portraits, and articles that cover the bar's walls were removed, the relics of decades of history gone.

Second, you ...

VIDEO: Westfield Police Show Love for Fallen Detective’s Son at Middle School Graduation

June 20, 2018

ROSELLE PARK, NJ — When his dad, a Westfield police detective who died last month, couldn’t be at young Eric Lieberman’s eighth grade graduation from Roselle Park Middle School, 16 members of the Westfield Police Department instead walked across the stage to give him a hug Tuesday night.

“What a beautiful tribute to both my son and his father,” said his ...

9-story apartment complex with roof-top pool formally opens in New Brunswick

NEW BRUNSWICK, NJ - The city's latest luxury apartment building recently held a formal opening for the complex on Neilson Street that has a roof-top pool with cabanas and grills, a dog park and pet spa.

The Quincy, a 393-unit, nine story building opened last month, offering studio and one- and two-bedroom apartment ranging in size from 503 to 1,236 square feet.

Mayor James Cahill said ...

Long Beach Township's Tuesday Night Concert Series Kicks Off on June 26

June 20, 2018

LONG BEACH TOWNSHIP - There will be concerts on Tuesday evenings at Bayview Park every Tuesday evening this summer. The concerts are from 7 to 9 p.m. 

Here is the Tuesday, Long Beach Township Concerts schedule:

Tuesday, June 26:  Mr. Lovejoy

Tuesday, July 3 Chris Fritz and The Impulsives presented by Barlow Buick GMC

Tuesday, July 10   Billy Walton Band ...

State Lawmakers Calling on Feds to Lift Strict Limits on Fluke Fishing for This Season

TRENTON, NJ — While New Jersey anglers began the fluke season last month with strict federal catch limits still in place, state legislators are pushing to have those regulations lifted until there is better data available on the popular fish’s offshore stock.

The State Assembly is asking the federal government to suspend a 40 percent quota reduction that enters its second year ...

America's Celebrated Evolving Journey

June 17, 2018

This Fourth of July, the United States of America will celebrate its 242nd birthday since the signing of the Declaration of Independence.  Our Nation was conceived in liberty at its core. Together we the people, with ancestors from every part of the world, continue the struggle to live by its founding noble principles.  Namely that, “We hold these truths to be ...

The Power of Positive Engagement

To the Editor:

I wanted to share this letter from Laurie Beacham, Media Director for NJ 11th for Change, about the notable increase in voter turnout and citizens deciding to run in the recent primary election:

"The 11th Congressional District has a lot to be proud of. In the June 5th primaries, voter turnout climbed from almost 33,000 in 2014 to over 86,000. Democratic ...

Bloomfield Bengals Sports Update May 21, 2018

Volleyball advanced to the County final with wins over Science Park and Montclair. Unfortunately, Livingston got the better of the Bengals in the County Championship Match.   

At the County Track and Field Championship Meet the Girls Team had a fine showing placing 5th overall. Leading the way was Kaela Edwards-2nd in high hurdles and Aicha Naouai- 2nd in javelin. The best ...

Bloomfield Bengals Athletic Update May 14 2018

 At the SEC Championship Meet La’Shan White equaled his school record in winning the 400-meter hurdles. He also won the 110- meter High Hurdles and anchored the winning 4x400 relay team. Aicha Naouai won the Javelin with a throw of 126’6.5(#9 NJ) and the Discus with a mark of 95’5”. Warlys Lizardo won the Boys Discus at 120’.

Kristina Collins reached ...

The Jaffe Briefing - June 20, 2018

STATEWIDE - What? So you are saying the state's pawn shops, second-hand stores and scrap metal yards are mob-infested? How could that possibly be? Well, just ask the scrappy State Commission of Investigation, which issued the 100-page report yesterday detailing how the mob is encouraging drug addicts to steal items to fuel this in-the-dark industry. Not only are these ...

TAPinto Featured Franchisee: Steve Lenox of TAPinto Paterson

This week's feature will focus on TAPinto Paterson's franchisee, Steve Lenox. Find out how the current owner of a public affairs firm went from a former State Director for Senator Frank Lautenberg to a proud TAPinto franchisee for New Jersey's third largest city.

 

Q. When did you join TAPinto.net?

I joined TAPinto.net in September, ...

The Woman in the Window by A.J. Finn

The Woman in the Window by A.J. Finn (William Morrow, 2018)

 

A friend, whose opinion on literature I respect greatly, reported to me recently that she had just finished reading A.J. Finn's debut novel, The Woman in the Window. Of it she said, “I wish I hadn't finished it,” which I interpreted to mean, “It was so good I'm sorry that I finished it.” ...

When the Men Go Off to War by Victoria Kelly

When the Men Go Off to War by Victoria Kelly (Naval Institute Press, 2015)

Victoria Kelly's first published volume of poetry, When the Men Go Off to War, is a wonder in that poems can be written so beautifully about the subject of war. Each poem is a jewel, polished and colorful, glittering with elegant imagery, and rich in emotional wallop. The book, divided into three sections, ...

The Queen of the Big Time by Adriana Trigiani (Ballentine Books, 2005)

            The Queen of the Big Time by Adriana Trigiani, a New York Times best selling author, was recommended to me by a young woman who actually came from the town of Roseto, Pennsylvania, the place where the novel is set. “The author did such a wonderful job of describing how the town actually is,” said the young lady.

The Great Alone by Kristin Hannah (St. Martin's Press, 2018)

            What is the “final frontier” on the Earth's surface? Many people would say Alaska, the 49th state, which was added to the United States fifty years ago. Once one has traveled to that remote land, it is impossible to forget the magnificence of the terrain and beasts. Floating by ship in Glacier Bay, surrounded by ...

NJ 11th for Change Endorses MIKIE SHERRILL for Congress

June 19, 2018

NJ 11th for Change Endorses MIKIE SHERRILL for Congress

Sherrill Meets Group’s Endorsement Criteria and Will Best Represent District’s Values

MONTCLAIR, NJ – NJ 11th for Change announced today that it has endorsed Mikie Sherrill for the U.S. House of Representatives seat in the 11th Congressional District of New Jersey.

After a comprehensive process including candidate ...

Rutgers Equine Science Center Annual Summer Showcase Scheduled for July 11

NEW BRUNSWICK, N.J. — The Equine Science Center at Rutgers University is hosting its annual "Summer Showcase" from 10 am to noon  on Wednesday, July 11 at the Equine Exercise Physiology Laboratory on College Farm Road on the George H. Cook Campus in New Brunswick. The Summer Showcase, similar to an open house, is a FREE event that is open to the public and perfect for any and ...

Horse Care Workshops at Lord Stirling Start June 23

BASKING RIDGE, N.J. — Somerset County Park Commission Lord Stirling Stable is offering Horse Care Workshop 101 for adults and youth seeking to gain experience and confidence around horses through a combination of non-riding activities and hands-on practice.

Horse Care Workshop 101 will be held at Lord Stirling Stable, 256 South Maple Avenue in Basking Ridge, NJ beginning Saturday June ...

Essex County Freeholder President Brendan Gill Proclaims June LGBT Pride Month

NEWARK, NJ – Essex County Freeholder President Brendan Gill announced that the Essex County Board of Chosen Freeholders passed a resolution at their last meeting, Wednesday, June 6, 2018, proclaiming June as LGBT Pride Month in Essex County.

“I am proud to stand with our LGBT brothers and sisters in recognizing June as LGBT Pride Month, and look forward to continue working ...

Obituaries

Jun 10, 1983 - Jun 17, 2018
Ryan M. Lucas, 35 Proud Marine Veteran and Nutley Firefighter Ryan M. Lucas, a lifelong ...
Read more
Sep 4, 1943 - Jun 10, 2018
William “Bill” Tangorra, 74, of Grand Rapids, Michigan passed away Sunday June 10, ...
Read more

Thirty Days after the Draft

It’s been just about thirty days since the 2018 NFL Draft and the New York Jets have been working hard to build the team fans have been waiting for. Let’s recap the first round draft pick before discussing OTA’s and other Jets info.

Some New York Jets fans were certain earlier in the 2017 season that with the way the win-losses were going, Sam Darnold would be the New York ...