GET TOGETHER FOR PARENTS & CHILDREN
Get Together for the Parents of
Young Children with SB and their Siblings
Thursday, August 19th from 12-2
(rain date 8/12)
Duke Island State Park
Old York Road, Bridgewater, New Jersey
All school aged kids with SB,
their siblings, and care givers welcome
Call Jen Shore to RSVP, 908-247-0709, or for more
information. The SBRN will provide drinks.
Fall Walk for Empowerment
Gear Up for a Great Walk in New York! Register Now!
When: Sunday, October 17th
Time: Registration @ 11am, Walk @ 12pm
***Family Picnic to Follow***
Where: Thomas Bull Memorial Park
(211 Route 416, Montgomery, NY)
Cost: No Fee, Please Raise pledges instead!
Featured Walk Participant: Katie Horsham
Katie Horsham is a force to be reckoned with. Not only has she been responsible for raising awareness about Spina Bifida and organizing walks in her area, but she is a driving force behind getting the “Walk for Empowerment” to Orange County. Despite living with Spina Bifida, Katie does all the things other 26 year-olds do. She drives, she is a part-time student studying human services/humanities and currently works in a human service agency. Her independence is something to admire. Despite the various challenges Katie has faced to get where she is, no one ever sees her sweat!
To Support Katie’s Efforts, click here.
How Do I Register?
Customize your own personalized flyer
Download a Sponsorship Application Form to be a Sponsor or a Vendor
What Can I Expect at the Fall Walk?
>Exciting activities, games, and prizes.
>Tricky tray Raffle-Games for participants of all ages
>Food and music and a good time!
>Gift cards awarded to top fundraisers.
>Support for the services provided to the
Spina Bifida Community
>Contribution to the health and well-being
of the children and families that walk with you.
Spina Bifida: Living to Empower
Come Join us for an Evening of Fun in Deptford, NJ
Happy Hour/Dinner Buffet/Tricky Tray Auction
When: Monday, November 1st
Time: 7-9 pm
Where: Adelphia Restaurant
(1750 Clements Bridge Rd)
Cost: $15/person (21 and up)
Sponsored by:
Puchase Tickets Here:
When: Monday, November 1st
Time: 7-9 pm
Where: Adelphia Restaurant
(1750 Clements Bridge Rd)
Cost: $15/person (21 and up)
Jackson School District Community Raises Money for “Team Ali” Spina Bifida Walk Fundraiser
Jackson, NJ: Three year old Allie, daughter of Mr. And Mrs. Matt and Dianna Kennedy, who was diagnosed with the most severe form of Spina Bifida at birth, is a very happy child despite the various medical conditions she faces daily, living with this permanent birth defect.
Spina Bifida is the most frequently occurring, permanently disabling birth defect in the United States. It occurs when there is an incomplete formation of the spine during the first stages of fetal development – a time when most women are unaware they are pregnant. This opening of the spine affects the nerves, causing partial to complete leg paralysis, bowel and bladder incontinence, skin sensitivity, hydrocephalus, and learning disabilities in varying degrees. Children with Spina Bifida endure countless surgeries throughout their childhood and into adulthood, and many families face medical bills nearing 1 million dollars.
Allie who requires various surgical shunt procedures was told she may never walk on her own unless she used braces. Little Allie does not let the diagnosis get to her. She is determined to prove the doctors wrong as she prepares to walk with her supporters on Sunday June 6th at the 2nd Annual “Walk for Empowerment for Spina Bifida” at the Long Branch Boardwalk North- Ocean Avenue between Cooper and Madison Ave.(Between Ocean Place Conference Resort and Rooney’s Restaurant). Registration for the walk begins at 9:00am and the walk starts at 10:00am.
The Kennedy’s are school teachers at the Jackson School District in Ocean County and have been rounding up support from the entire school district to help raise funds that go towards family support and nursing coordination for children and adults living with Spina Bifida.
Since January 2010, The Future Business Leaders of America (FBLA) at the Jackson School have raised money selling yellow wristbands which represent Spina Bifida as well as the National Art Honor Society of Jackson who created birdhouses that were hung around the school to collect donations to go towards “Walk for Empowerment-Team Ali” fundraising efforts. So far, over 35 walkers are registered to walk from the school district that will represent “Team Ali”.
The Spina Bifida Resource Network is the only non-profit 501 (c)3 organization in the New Jersey and Metro New York region that focuses solely on supporting individuals with Spina Bifida. The funds raised from this event will assist families with extraordinary medical expenses and provide special family support programs for children, teens and adults who face daily life challenges with their disability.
The Spina Bifida Resource Network encourages all women of childbearing age to consume 0.4 mg (400 mcg) of folic acid daily to reduce the incidence of Spina Bifida by up to 75 percent.
For more information on this event or to register for the walk, please visit www.thesbrn.org or call 908-782-7475 ext: 106.
Meet Blanca Gomez, R.N., SBRN Family Support Nursing Coordinator!
We are proud to introduce our new nurse, Blanca Gomez, to the SBRN family. Ms. Gomez received her Master’s of Science from Stevens Institute of Technology and her Nursing Degree from Trinitas School of Nursing. Blanca will be providing nursing coordination for families in New Jersey, as well as families needing Spanish/English translations. She will also support Medical professionals by serving as a liaison for Spanish speaking families and their physicians. Welcome Aboard!Thanks for being a part of the Spring “Walk for Empowerment” for Spina Bifida
THANK YOU!
To everyone who attended and supported the 2nd Annual Spring “Walk for Empowerment” at the Long Branch Boardwalk on Sunday, June 6, 2010
Special thanks to the Long Branch Fire
Department for their Fire Safety Demonstration
Special Thanks to the Girl Scouts of the Jersey Shore Troop 1720 for their volunteering services
Thanks to our Event Sponsors
Monmouth Family Health Center
Save the Date
Walk for Empowerment, Sunday June 5th 2011
at the Long Branch Boardwalk in Long Branch New Jersey!
Dr. Bruce Gans, Kessler Institute’s Chief Medical Officer, Honored by the Spina Bifida Resource Network
The Alternative Press.Com Announcement of SBRN Honoring Dr. Bruce Gans October 26 2009
SBRN Family Member Earns Highest Rank in Scouts
Source: Township Journal Papers, Sussex County New Jersey January 6, 2010
STANHOPE — Jenna Wilson, a junior at Lenape Valley Regional High School, recently achieved her Girl Scout Gold Award, the highest award a Girl Scout can earn.
The award requires the completion of leadership development, career exploration, and community service projects. The final component is a 65-hour leadership project that each girl plans and executes to benefit her community. For her project, Jenna raised awareness of spina bifida, a developmental birth defect.
“I have a family history of spina bifida,” Jenna said. “I’ve noticed first-hand how many people have never even heard of the disease, even though it is the No. 1 permanently disabling birth defect among children. Many babies can be spared from getting spina bifida by education and prevention with folic acid.”
Jenna participated in the Spina Bifida Resource Network’s Stroll n’ Roll at the boardwalk in Long Branch. She also gave out information at libraries, doctor’s offices and clinics in Morris, Sussex and Warren counties.
A dedicated Girl Scout in Byram Troop No. 645 since she was in kindergarten, Jenna has earned more than 140 badges and awards and says Girl Scouts sparked her love of helping the community.
SBRN Executive Director Speaks at New Jersey Department of Human Services Budget Forum
Flemington, NJ: On December 3, 2009 the Executive Director of the Spina Bifida Resource Network, Ms. Julia McConnell appeared at the New Jersey Department of Human Services Budget Forum in Trenton.
Ms. McConnell stated that she was fearful the current economic climate may cause cuts in services can lead to poor care associated with Institutionalization that can happen without notice if cuts continue to be made to services for people with Developmental Disabilities.
She urged the upcoming budget preparation should be based upon sound values that were established back in the 1970’s whereby each and every person with a Developmental Disability has the right to a full and varied life that includes living safely, being contributing members in communities, participating in activities and recreation, enjoying meaningful relationships with family, friends and neighbors and the opportunity to work and study.
She added that the cost associated with providing care have far surpassed the moneys allowed in current provider contracts. She recommended increases such as in gas and energy costs, health insurance costs, as well as workers compensation costs be included in the upcoming budget.
Ms. McConnell also stated that one of New Jersey’s greatest resources are the families who care for their children with disabilities at home. These families understand that the current budget crisis means less family support dollars which should not be cut. She commended Assistant Commissioner Ritchey and his staff for the work they have done with drawing down waiver dollars to support community care services. She stated there is more work to be done by looking at efficiencies in utilization of dollars and creating solutions to continue maximizing federal dollars with more creative programmatic solutions for maximizing federal waiver dollars that need to be included in the new budget. Ms. McConnell concluded by asking the budget committee to remember that our families are the backbone of New Jersey’s developmental disabilities system. Without them, the system simply cannot support the number of people who need a high level of day-to-day care. She urged that the state work to meet the needs of care giving families which is both the cost effective and morally right thing to do.
Executive Director Statements included in 2009-2013 NYS Comprehensive Plan
Flemington, NJ: The Executive Director of the Spina Bifda Resource Network (SBRN), Ms. Julia McConnell testified at the New York State Office of Mental Retardation and Developmental Disabilities (OMR/DD) 2009-2013 Statewide Comprehensive Planning Hearing. In attendance were Commissioner Ritter and various Associate Commissioners from OMR/DD. Ms. McConnell emphasized the continued need for special education and supported employment programs as well as the need for continued support for specialized nursing and social services coordination for persons living with Spina Bifida in New York State.
SBRN showed support with OMR/DD’s Institute of Basic Research (IBR) efforts to reduce the occurrence of developmental disabilities and improve the quality of life through an integrated approach. SBRN encouraged the IBR to include in its research a study of improved treatment approaches in dealing with executive function disorder as it relates to Spina Bifida. She explained that currently, OMR/DD service opportunities are lost because eligibility assessments do not pick up the intricacies of issues unique to persons with Spina Bifida. This is mainly due to case managers/service providers not recognizing the associated issue of executive function disorder during the eligibility assessment process. Better understanding and treatment approaches need further investigation so people with Spina Bifida can access OMR/DD services.
The testimony ended with Ms. McConnell’s recap of the importance of continued funding for Family Support Services. For more information on the 2009-2013 New York State Comprehensive plan, please visit http://www.omr.state.ny.us.
Determined Woman With Spina Bifida Receives Her Dream Job with the New York Jets
Florham Park, NJ: Megan Morhbutter of Florham Park New Jersey was raised to be an advocate for herself. Morhbutter, a 23 year old recent graduate of Caldwell College was born with Spina Bifida. She has overcome 49 surgeries in her lifetime and doctors told her parents that she would not live past the age of five. Eighteen years later, Megan is not only living- but also living her dream. Recently she landed her lifelong dream job with the New York Jets.
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Taste for Empowerment 2009 Post Event Re-Cap
The 2nd Annual “Taste for Empowerment” to benefit Spina Bifida was held on Monday, October 26th at the Basking Ridge Country Club in Basking Ridge, New Jersey. Thank you to all who joined us for a memorable evening as we honored Dr. Bruce Gans, Chief Medical Officer of the Kessler Institute for Rehabilitation in West Orange, New Jersey.
Special Thanks to our generous sponsors who helped support this event: SB Genetics, NJ Pediatric Neurosurgery, The Kessler Foundation, The Kessler Institute for Rehabilitation and to The Children’s Hospital of Philadelphia.
Walk for Empowerment Stroll n’ Roll – Oct 2009
We had a blast at the Fall Stroll ‘n Roll on October 10th at Pleasant Valley Park in Basking Ridge, NJ. Despite the weather, the strollers ‘n rollers enjoyed a great walk and great food. Special thanks to our donors, SB Genetics, Whole Foods, Millington Savings Bank, Rossi Family Chiropractic Center, Uromed, Accessible Vans & Mobility, Fairmont Appraisals, Sound Defying Entertainment, and Union Pediatric Associates, P.A.. We would also like to thank the Middlesex Elks for providing a family picnic following the walk. Please consider joining us this Spring at the Walk for Empowerment in Long Branch, NJ.
Eat Food – Cookbook
“Eat Food and Other Advice for a Healthy Diet”
Now Available!
This new book is a feast of delicious recipes, wit, wisdom and inspiration for healthy habits!
Author Jennifer Shore, SBRN Family Support Coordinator, states:
The book was written “so all individuals will have the information they need to make healthy food choices that will lead to a greater quality of life and wellness.”
“All the recipes here are created specifically with people with Spina Bifida in mind.”
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New Jersey Nursing Coordinator Reaches Her Prevention Message to South Africa
Sometimes a letter to the editor can go a long way to help make a difference – literally!
When Renee Krul, a registered nurse for the Spina Bifida Resource Network responded to an inspiring article she read in Mishpacha Magazine about a courageous couple just married and both living with Spina Bifida, she plugged an important message to frum communities about prevention methods to young high school and seminary girls to begin forming the daily habit of taking a multi-vitamin that contains 400 micrograms of folic acid. Within hours, the Spina Bifida Resource Network began to receive calls and e-mails from communities as close as Prospect Park New York to as far as South Africa who were inspired by this important prevention message and who then asked for more information to be sent to them. Incidentally, her message influenced the Counselor Director of the Jewish Marriage Education (JME) in Johannesburg South Africa to call and request for information to be sent to her office about prevention.
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