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The
A publication of the Spina Bifida ReSouRce netwoRk
Volume 16, Issue 1, March 2016 84 Park Avenue, Suite G-106 Flemington NJ 08822 Web: www.theSBRN.org Email: [email protected] Office Phone: 908.782.7475 Fax: 908.782.6102
Empowerment Zone
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In This Issue... From the Desk of Roberta Kestenbaum cover
SBRN Events Photo Recaps page 2
FAQ’s About Shunts page 3 Questions and Answers with Dr. Mazzola
SBRN Past Walks pages 4 -5
Things to Do and Places to Go pages 6 & 7Accessible Trails, Attractions and Playgrounds
Links to Summer Camp Info page 7
Join us on Facebook!
SBRN and Dr. Catherine A. Mazzola from the NJ Pediatric Neuroscience Institute are interested in putting together a one-day Education Seminar for individuals with spina bifida, their family members and caregivers. Speakers would provide in-formation on spina bifida and other topics of interest such as medical care, advocacy, employment and more. To help us plan for this event, we are conducting a brief survey to see what your interests are and how we can best meet the needs of the community. Please take a few minutes to complete this survey:
https://www.surveymonkey.com/r/62RXRPC
From The Desk Of Roberta Kestenbaum
Save the Date!Sun June 5, 2016
Soon enough Spring will be upon us and we’ll be looking to get outside and feel the fresh air on our faces. Check out some suggestions for accessible NJ attractions, playgrounds and trails on page 6. Enjoy!Good News! SBRN is pleased to announce that we were recently awarded a Quality of Life Grant from the Christopher and Dana Reeve Foundation with additional support from the Provident Bank Foundation. These funds will support our Strive for Independence Program, which offers Family Support services in NJ for children with disabilities and their care-givers. This program seeks to increase self-sufficiency for children with continence issues related to physical disabilities by providing education, training and tools to allow them to take control of their care and become more independent. Our nurses and social workers will work directly with each child and their caregivers to assist them in achieving meaningful, personalized healthcare goals. Please contact SBRN if you would like to speak with us about this program.Welcome! The SBRN staff and Board of Directors are pleased to announce that Armand Cucciniello III has accepted our invitation to join our Board of Directors. Armand comes to us with a great deal of experience in public relations/commu-nications. Armand expressed interest in volunteering with SBRN as a way of honoring a family member with spina bifida who recently passed away. He is very excited about becoming involved with our organization and offering his services. We are happy to have him on board!
Knob Hill Pavilion156 Mettlers Road
Somerset, NJ
See pages 4-5 for a fun stroll and roll through history!
(cont’d on page 3)
Would You Be Interested in Attending a
SPINA BIFIDA EDUCATION DAY?
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2016 HOLLYDELL ICE SKATE SOCIAL
WINTER WORKSHOP & HOLIDAY LUNCHEON 2015
Hosting an SBRN Book Drive: Fundraising Success!
In December, our annual Empowerment Retreat for Adults with Disabilites capped off with a seminar on current trends in Healthcare by Eileen Creenan, RN, our Annual meeting, and a fun luncheon.
Gingerbread house decoration, dancing, a bit of Karaoke and some Photobooth fun also took place. Our staff at SBRN loves to spend these happy moments with you. Thank you to all who helped us celebrate the holidays!
The generous folks at Hollydell Ice Arena in Sewell, NJ welcomed SBRN for the 5th annual All-Abilities Ice Skate Social. One of our favorite events of the year invites people of all ages and abilities to try out the ice in any way they please: in sneakers, skates, wheelchairs, tubes, or even to try out sled hockey sleds! The Glassboro Police Department came out to scrimmage the Vineland Sled Stars this year and put on another great showing of community spirit!
Special Recognition goes out to Nancy Andrelczyk, the Holldell Ice Arena, The Olsen Family, the Glassboro Police Department and the Vineland Sled Stars!
Ethan Wimmer of Lebanon, NJ recently completed a book drive for SBRN for his Eagle Scout project. He more than tripled his goal and collected over 5,000 books! Way to go, Ethan!!
SBRN works with New Legacy Books to collect used books which will be resold. A portion of the proceeds is donated back to SBRN which helps to keep our Family Support program going.
Interested in hosting your own book drive? Give the office a call or email Laura: [email protected]!
State Update: The NJ Division of Developmental Disabilities (NJ DDD) continues its changeover to its new Medicaid-based Supports Program. Remember – to receive services in this new program, you must be eligible for Medicaid (for example, through SSI or Workability) and you must be DDD-eligible. If you have not been receiving services from DDD other than through SBRN, DDD may have closed your case and you will need to re-apply. Please contact us at SBRN or contact your local DDD office if you have any questions.
From The Desk Of Roberta Kestenbaum
1. How often should shunts be checked? Should they be scanned annually?
You should visit your spina bifida clinic or neurosurgeon once a year. They will determine if you need an eye exam, cognitive evaluation, electrophysiological studies, physi-cal therapy evaluation, x-rays, CT or MRI studies.
2. Are there signs to look for that a shunt is beginning to malfunction?
Even small cognitive changes or loss of abilities, such as vision, executive function, or other abilities can be signs of shunt malfunction.
3. Should shunts that are no longer working be removed?
There is a lot of debate about how to determine if shunts are truly “non-functional”. Every patient is different, so it is best to see a Spina Bifida team neurosurgeon once a year to see if your shunt is truly “non-functional”.
4. When are shunts most likely to fail (i.e., within the first year? 5 years? 10 years?)
Shunts are MOST likely to fail within the first 30 days after insertion. That being said, even patients who have had working shunts for 40 + years, still need annual follow-up.
5. What causes shunt infections and are they likely to cause short–term or long-term damage? How are they treated?
Shunt infections most frequently occur right after surgery. Those infections are typically caused by bacte-ria normally found on the skin. Those that occur years later are usually caused by bacterial translocation or movement across the gut wall because of severe, chronic constipation or impaction.
6. What can happen if a child gets hit on the head where their shunt is located? What about a hit to the head in another area?
Any hit to the head may cause a shunt disconnection. Any sign of neurological or other changes should be reported to your neurosurgeon immediately.
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Frequently Asked Questions (FAQs) about SHUNTS
We recently asked Dr. Catherine Mazzola from theNew Jersey Pediatric Neuroscience Institute (NJPNI) to give us her thoughts on some questions that we often hear regarding shunts. Here are her replies:
Thank you Dr. Mazzola, for your helpful information!
(continued from page 1)
Learn More Regarding Signs and Symptoms of Complication:http://www.hydroassoc.org/signs-and-symptoms-of-complication/http://www.cincinnatichildrens.org/health/s/shunt-malfunction/
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SBRN PAST WALKS TO REMEMBER . . .
Join us for the 2016 Walk for Empowerment
Sunday, May 2, 2004 - Spruce Run Recreation, Clinton, NJ Sunday, May 25, 2005 -
Spruce Run Recreation, Clinton, NJ
Sunday, May 7, 2006Spruce Run Recreation, Clinton, NJ Saturday, September 29, 2007
Spruce Run RecreationClinton, NJ
Sunday, September 21, 2008 Liberty Village Outlets, Flemington, NJ
Sunday, June 7, 2009Long Branch Boardwalk
Long Branch, NJ Sunday, June 6, 2010
Long Branch BoardwalkLong Branch, NJ
Saturday, October 10, 2009Pleasant Valley Park Basking Ridge, NJ
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Walk for Empowerment Sunday, June 5, 2011Long Branch Boardwalk, Long Branch, NJ
Sunday, June 3, 2012Long Branch Boardwalk, Long Branch, NJ Sunday, June 2, 2013
Long Branch Boardwalk, Long Branch, NJ
Sunday, June 8, 2014Long Branch Boardwalk, Long Branch, NJ
Sunday, June 7, 2015 Colonial Park, Somerset, NJ
MARK YOUR CALENDAR! SUNDAY - JUNE 5, 2016
Join Us for our 8th Annual Walk for Empowerment for Spina Bifida at Colonial Park in Somerset, NJ
Registration and Sponsorship information will be available on our website soon!
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THINGS to DO and PLACES to GO . . .Now that spring has nearly sprung, it’s time to get out and
enjoy yourself! Here are some suggestions for some Accessible Trails, Attractions and Playgrounds
Boulevard Trolley Line Path – Mountain Lakes This 2.1-mile long paved path runs directly adjacent to the Boulevard in Mountain Lakes and follows the route of a former trolley line operated by the Morris County Traction Company. The path has breathtaking views of the many Colonial, Georgian and Spanish-style homes and has plenty of shade.
Cooper River Park – Haddon Township The 346-acre park is found on both the north and south shores of Cooper River Lake and offers a paved 3.5-mile loop as well as other recreational facilities such as play-grounds, restaurants, 100 benches, picnic tables, and more.
Middlesex Greenway - MetuchenThe 3.5-mile Middlesex Greenway connects the towns of Edison, Metuchen, and Woodbridge. The paved pathwayoffers access to schools, neighborhoods, parks, and shop-ping centers.
Gloucester Township Health/ Fitness Trail – Gloucester Township (aka Blackwood Railroad Trail)The paved path is constructed on an abandoned railroad right-of-way and connects neighborhoods with schools and recreational facilities. One of the trail's highlights is a restored railroad caboose. The trail also goes in and out of wooded areas.
United States Avenue Trail - GibbsboroKnown as the "Green Trail", travels through a primarily wooded landscape between Foster Avenue and Egg Harbor Road in Gibbsboro, NJ.. The park contains ball fields, a concession stand, amphitheater, walking path and tot lot.
See Link for more details and options:
http://www.traillink.com/stateactivity/nj-wheelchair-accessible-trails.aspx
ACCESSIBLE TRAILS
Challenger Place - Monmouth-County Park - Dorbrook Recreation Universally accessible play facility includes elevated surfaces, Braille signs and three play structures with areas where children of varied abilities can play together. Located at 209 Rt. 537 E. Colts Neck
Phil Rizzuto Park 10.4-acre recreational area features a fully accessible play area for children of all physical abilities. The park is decorated with baseball themes, a baseball-style seating area, gazebo with stadium-theme overhead, and granite dedication monument. Other attractions include a spray pool, pedes-trian bridge, soccer field and para-course fitness stations. Located at 594 Morris & North Avenues, Union
PLAYGROUNDS
Edgemont Park Children's Playground Full playground offers universal access for children of all ages and abilities. Located at 20 Edgemont Rd., Montclair
Memorial Park Built by Greg Ryan, Jr. in 2004 for his Boy Scout Eagle Project, the wheelchair-accessible playground includes a sidewalk from the parking lot to a ramped playground structure with rubber surfacing, two infant, two regular and four special needs swings, one accessible picnic table and four benches. Located at 713 Cumberland St., Westfield
Check out link for more options:
Morris-Union Jointure Playground Open for use by the public on week-ends and after 6pm weekdays. Play-ground, specially designed for children with special needs, features swings with high sides, platform swing, bas-ketball court, enclosed slides, reduced-height climbing bars, cushioned with a 15-inch carpet of wood chips. Located at 340 Central Ave., New Providence
Rainbow Land - Midland SchoolFully handicapped accessible play-ground for student and communityuse features sandbox and planter, mock post office and bank, large tire toy, small theater, wheelchair slider, slides, swings and numerous other sensory-motor activities. Located at 94 Readington Rd., North Branch (continued on page 7)
http://www.kidsguidenj.com/special needs/specneeds playgrounds.html
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Things to Do and Places to GO (continued)
Adventure Aquarium, Camden The aquarium, which is fully wheelchair accessible, has a 40- foot suspended shark tunnel, a 4D theater, up-close and personal animal experiences, and free live shows!
Cape May CityThis picturesque city is on the registry of National Historic Landmarks as the nation’s oldest seashore resort, host-ing vacationers from Philadelphia in the mid-1700s. The award-winning beaches are beautiful, with newly created wheelchair access right to the water’s edge. Even if beach-es aren’t your thing, the city itself will charm you like no other. The Cape May promenade (their boardwalk) is actually paved, so wheeling your way to see the sights is a breeze, and there’s plenty to see and do along the promenade. Stop in for some real saltwater taffy!
Cowtown Rodeo, PilesgroveNew Jersey is probably one of the last places you’d expect to find a rodeo in the U.S., yet they’ve been riding bulls here every Saturday night between the end of May and the end of September—since 1929. You’ll also be treated to bareback bronc riding, saddle bronc riding, steer wres-tling, girls’ barrel racing, team roping, and tie down roping. Along with steer and horses, the wheelchair accessible rodeo has hot sandwiches, snacks, drinks—and a decidedly different (unless you’re from the West) and exciting time awaiting you.
Great Falls National Park, Paterson Yes, there are Great Falls in Paterson, NJ. The park, including the fall’s over-look, the Paterson Museum, the Great Falls Historic District Cultural Center, and some paved routes are wheelchair accessible.
Statue of Liberty Cruise, Jersey City This ferry sails into New York harbor from Jersey City to bring passengers to two of the most iconic sights in the United States - the Statue of Liberty and Ellis
Island, where thousands of our nation's immigrants first arrived in this country. The ferry is wheelchair accessible, and you'll have the opportunity to disembark and tour both locations. The grounds of the Statue of Libery are fully wheelchair accessible. If you have a reservation to enter the monument, you'll find the Informa-tion Center, Gift Pavilion, Book Store, and dining facilities ADA-compliant. At Ellis Island, the grounds and first floor of the museum are wheelchair accessible. If you've never seen the Statue of Liberty, you shouldn't miss this Jersey-based opportunity!
The Thomas Edison Center, Menlo Park In 1876, a young, unknown inventor named Thomas Edison moved his experimental facilities to a small village in New Jersey called Menlo Park. Over the next six years he patented around 400 inventions—the electric light bulb, the phonograph, the in-candescent lamp, and a variety of devices that helped bring the telephone into homes across America. The center, open Thursday through Saturday, is wheelchair accessible. It's an inspiring place for the inventor in all of us!
ATTRACTIONS
Check out link for additional information: http://www.amsvans.com/research-wheelchair-vans/travel/new-jersey-unfuggedable-accessible-attractions
Financial Support toward Summer camp tuition 2016: deadline april 30, 2016The Children’s System of Care (CSOC) is pleased to announce that they will be able to provide eligible chil-dren, youth and young adults under 21 years of age Financial Support toward Summer Camp Tuition. Apply Online! LEARN MORE: bit.ly/csoc2016campfaq
Hunterdon County Special Child Health and Early Intervention Services’s Special Kids Gazette: 2016 Summer Camp Edition is available on our website: www.thesbrn.org/living-with-sb/resources
The SBRN is a source of support and information and provides opportunities for the
Spina Bifida Community to connect on a personal level.
Our mission is to EMPOWER the lives of people living with Spina Bifida through direct service
programs, advocacy, and providing information about the prevention of Spina Bifida.
We are one of the few Spina Bifida organizations nationwide who providedirect nursing and social service
coordination.
For more information contact our office [email protected], or call 908.782.7475.
We welcome the opportunity to hear from you.
Millie GonzalezChairman of the Board
Roberta Kestenbaum, PhD, MSWExecutive Director
Michelle TomaszewskiFamily Support [email protected]
Zara Daniels Family Support Coordinator, Bilingual
Barbara Dombroff, RNFamily Support Nurse
Jeremy CantilinaBusiness Manager
Carrie DonatDevelopment & Events
Laura LariceEditor, Administrative Assistant
84 Park Avenue, Suite G-106 Flemington, NJ 08822
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The information and other materials contained in this newsletter individually and collectively are provided for educa-tional and informational purposes only and are not a substitute for legal, medical advice or treatment.
Neither recommendations nor endorsements are implied.
NON-PROFIT ORG.U.S. POSTAGE
PAID FLEMINGTON, NJPERMIT NO. 376
