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?

1. Register Online Here      Instructions for registering.
2. Download a Registration Form

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 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 6^th at the 2^nd 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.

Topics you won’t want to miss in the  July/August 2010 Issue of the Empowerment Zone Newsletter:

• Filling In The Gaps:  Make New Choices-Create New Outcomes
• Other Avenues
• Resources: Tethered Cord Syndrome
• Guardianship
• College Planning and Advising for the Student with Special Needs
• Health Tips: Getting the Most from Your Doctor Visit
• Everything You Wanted to Know About Spina Bifida, But Didn’t Know to Ask… Tethered Cord Syndrome
• What’s Happening at SBRN
• Teleconferences
• Adelphia Evening of fun
• Photos and recap: Walk for Empowerment Spring

http://thealternativepress.com/article.asp?news=9747&Dr.-Bruce-Gans,-Kessler-Institute%E2%80%99s-Chief-Medical-Officer,-Honored-by-the-Spina-Bifida-Resource-Network-

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.

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.

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.

Being brought up in a home full of avid Giants fans, Megan felt the need to be different and became a dedicated fan of the Jets and the game of football.  Since she was 10, she had a crush on Wayne Chrebet, the past Jets wide receiver.  Her childhood dream was to someday work for the New York Jets. Megan, a resident of Cheshire Home, a nursing facility for young people with spinal cord related injury and diseases in Florham Park New Jersey and when she found out that the new Jets training facility was being built next door, she was excited for the possibility of meeting some of the players. Morhbutter received a B.A. in Communication Arts on May 17, 2009.  Five days earlier, on May 12, Megan attended a golf fundraiser for Spina Bifida hosted by the Spina Bifida Resource Network (SBRN). SBRN is a 501 c 3 non-profit and is the only organization dedicated to exclusively serving numerous individuals plus innumerable family members who are living with Spina Bifida in New Jersey and Metro New York. Here, she met Bruce Harper, a Jets Alumni who was a participant at the golf event. While assisting on the course, Megan assertively reached out to Mr. Harper explaining how big of a fan she was by proving to him she knew the number of wins and losses in a 5 year period. Impressed with her tenacity and accuracy, Mr. Harper referred her to someone at the Jets Corporate office. Megan sent out her resume and cover letter to the Jets expressing her desire to work for her favorite team. 

This fall, Megan began her part-time work as a media relations coordinator for the Jets.  She is in charge of meal sign in 2 hours before every home game and meeting and greeting the sports media. Her favorite part of the job is getting to watch the game live from V.I.P. seats and meeting sports media personalities.

During her college career she married. She cared for her husband who was sick up until the time he passed away. It is her husband’s encouragement, she says, that still motivates her to keep going. He told her not to stay home, but to continue on with her life. After his passing, Megan had to take a semester off for medical reasons. It was then that she started volunteering at a nursing home and, she continues that volunteer work today. She reads mail to the elderly, plays bingo with them, gives the ladies manicures, and just plain keeps them company. “I actually love it,” she said. She also goes to grammar schools and speaks to children to educate them about disabilities.

Megan states: “My mother raised me to be independent. I was raised to be an advocate for myself. That is how I have always been.” During her college career, she said, “I had very open communication with everyone on campus. I told them what I needed.”  Megan’s persistence and tenacity is what makes her unique towards her attitude about living with her disability. She is a true believer that no one and nothing can stop you from living your dream.

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