News


Fundraising with SBRN and New Legacy Books

Flemington, N.J. – The Spina Bifida Resource Network (SBRN), a nonprofit agency located in Flemington, is collecting used books to raise funds to support services for children and adults with disabilities.

SBRN is working with New Legacy Books to collect used books in good, readable condition, which will then either be resold or recycled.  Part of the proceeds is donated to SBRN.  Hardcover, paperback and textbooks are accepted as long as they have a ISBN barcode label on the back cover.  Books can be placed in the large green bins located in the back parking lot of the “Old Egg Auction” complex, at 84 Park Avenue, Flemington.

“We are very excited to work with New Legacy Books to help support children and adults living with spina bifida and other disabilities.  It’s an added bonus that we are helping the environment by re-using or recycling all of these books,” said SBRN Executive Director, Roberta Kestenbaum.

Anyone who has used books can donate.  SBRN is also looking to work with volunteers who want to hold book collections.  “This is a great opportunity for Scout troops, school or youth groups who would like to do a community service project,” noted Laura Larice, SBRN Administrative Assistant. Anyone interested in doing a book collection should contact SBRN at info@thesbrn.org or 908-782-7475.

The Spina Bifida Resource Network has provided specialized nursing and care coordination to families of children and adults with spina bifida in New Jersey for over 30 years. Spina bifida is a birth defect of the spine which limits mobility and affects daily living. SBRN works with individuals with disabilities to achieve greater health and independence and also educates the public on folic acid’s role in preventing this permanently disabling birth defect.

 

MARCH 2016:

Ethan Wimmer, of Lebanon, NJ recently completed a very successful book drive for his Eagle Scout community service project.  Ethan was able to collect over 5,000 books!  We are very grateful for the work he did, and wanted to share some photos of his successes!


2011 Recap: SBRN Receives a Reeve Foundation Grant Towards an Accessible Kids on the Move Program

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Flemington, NJ: (AUGUST 2, 2011) The Spina Bifida Resource Network (SBRN), a 501 c 3 organization that services children, adults and their families who live with Spina Bifida in New Jersey and Metro New York announced today that it has been awarded a Quality of Life Grant through the Christopher and Dana Reeve Foundation in the amount of $9,000 towards their Kids on the Move (KOM) program. The Reeve Foundation’s Quality of Life Grants are awarded twice yearly to non-profits dedicated to improving the lives of those living with paralysis.

The Kids on the Move (KOM) is a series of six events throughout New Jersey and New York that will consist of an inclusive, accessible athletic activity for children living with Spina Bifida ages 5-21. The program is set to achieve three objectives: combat obesity with adaptive physical activities coupled with food preparation demonstrations that show how to incorporate healthier foods into their lifestyle;  give children with Spina Bifida a sense of belonging with peers that understand their challenges; provide a support network for parents and caregivers who will have opportunities to share concerns and experiences with each other along with medical professionals who will lead certain seminars throughout the year.

SBRN was awarded the grant based on the programs access and day to day quality of life for families and individuals living with Spina Bifida which will enable people to live independent and active lifestyles. The grant funding will cover the six events and seminars along with various recreational activities throughout New Jersey and Metro New York as well as Hudson Valley and Orange County.

Julia McConnell, Executive Director of the Spina Bifida Resource Network states, “This is a tremendous opportunity for the regional community of kids and their families who are living with Spina Bifida”. She added, “It is our way of helping them pave the path to living active lifestyles which can sometimes be challenging when the disability can inhibit you from being proactive to health”.  The program follows the organization’s mission to advocate and empower individuals living with Spina Bifida.

“The Quality of Life grants program Dana envisioned twelve years ago reflects what she always believed in,” said Peter T. Wilderotter, president and CEO of the Christopher & Dana Reeve Foundation. “People living with paralysis have a right to a life with dignity and empowerment. The organizations awarded these grants provide just that to these individuals, their families, and caregivers.”

The Reeve Foundation’s Quality of Life grants are divided into three categories; Actively Achieving, Bridging Barriers and Caring and Coping. Quality of Life grants are funded through a cooperative agreement with the Centers for Disease Control and Prevention (Award #1U59DD000338). These grants are awarded to nonprofit organizations that address the needs of people living with paralysis caused by spinal cord and other injuries, diseases and birth conditions.

The Reeve Foundation is dedicated to curing spinal cord injury by funding innovative research, and improving the quality of life for people living with paralysis through grants, information and advocacy.

The mission of the Spina Bifida Resource Network (SBRN) is to empower the lives of people with Spina Bifida and promote the prevention of Spina Bifida through advocacy, education, collaboration, public awareness, research and programs. For more information about the Spina Bifida Resource Network, please visit www.thesbrn.org or call 908-782-7475.

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Study: Fetal Surgery Best for Spina Bifida

Wednesday, February 9 2011: Diane Sawyer of ABC World News Tonight and Brian Williams of NBC Nightly News announced the success of  “The 10 Year Fetal Surgery Study” done for babies with Spina Bifida.

Please take a look at the links below for more information about the study and let us know what you think.

http://www.chop.edu/service/fetal-diagnosis-and-treatment/fetal-diagnoses/spina-bifida.htmlutm_source=facebook&utm_medium=cpc&utm_content=Spina+Bifida+Surgery&utm_campaign=CHOP+-+Spina+Bifida

http://www.msnbc.msn.com/id/21134540/vp/41499228#41499228


The Spina Bifida Resource Network Promotes January Folic Acid Awareness Month

Flemington, NJ (December 14, 2010) — Eight babies are born every day in the United States with Spina Bifida or a similar neural tube defect. The Spina Bifida Resource Network (SBRN) is working with the goal of highlighting reduced occurrences of the birth defect during the month of January to promote “Folic Acid Awareness Month” with a message to women who are planning to be pregnant.

The birth defect occurs during the first month of pregnancy when the spine of a baby fails to close which can lead to paralysis and many other permanent issues.  An estimated 7,000 people in the tri-state area currently live with Spina Bifida — the most common permanently disabling birth defect in the United States. SBRN encourages all women of childbearing age to consume 0.4 mg (400mcg) of folic acid daily to reduce the incidence of Spina Bifida by up to 70%.

The purpose of “Folic Acid Awareness Month” is to educate the public with further understanding of the foods and vitamins a women’s body needs months before and during the stages of pregnancy says Julia Mc Connell, Executive Director of the Spina Bifida Resource Network.  “It’s essential that people are aware of folate rich foods and the exact intake of folic acid supplements required during pre-pregnancy stage. Lifestyles of busy women all over the world vary.  SBRN’s postcard message along with a list of foods needed in their grocery cart and two wholesome recipes assist women to remember their folic acid intake.

In efforts to spread awareness about Folic Acid for the month of January, SBRN has partnered with Planned Parenthood of New Jersey to distribute the postcard recipes in each of their OB/GYN offices.

The Spina Bifida Resource Network provides support and services to people with Spina Bifida and their families through education, advocacy, research, and service.  SBRN is the only organization solely dedicated to advocating on behalf of the Spina Bifida community.  For more information on Spina Bifida please visit www.thesbrn.org or call 908-782-7475.


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.