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F a m ily S u p p o r t N e w s l e t t e r o f t he S p i n a B i f i d a A

s s o c i a t i o n o f t h e T r i - S t a t e R e g i o n

The Empowerment Zone

JANUARY-FEBRUARY 2008

Visit our website

WWW.SBATSR.ORG

The Empowerment Zone is a

service of the Spina Bifida

Association of the Tri-State

Region (SBATSR) Family

Support Program, funded in part

by the New Jersey Division of

Developmental Disabilities.

Spina Bifida Association of

the Tri-State Region

84 Park Avenue

Flemington, NJ 08822

908.782.7475 phone

908.782.6102 fax

1.877.722.8774 toll free

info@...

www.sbatsr.org

K. Holmes

Chairman of the Board

Jane Horowitz

Executive Director

Betty McLaughlin -

856.825.0838

Program Coordinator

Shore - 908.247.0709

Family Support Coordinator

Krul - 908.247.0620

Nursing Coordinator

Roslyn Gleeson - 908-328-9196

Nursing Coordinator

Marie Arieno

Marketing & Event Coordinator

Lea Plummer

Editor

Administrative Assistant

Comments & suggestions are

welcome! Contact:

info@...

Take Action!

The information, and other materials

contained in this newsletter individually

and collectively, are provided for educational

and informational purposes

only and are not a substitute for legal,

medical advice or treatment. Neither

recommendations nor endorsements are

implied.

MAKE IT YOUR PERSONAL

GOAL TO BE PART OF THE

SOLUTION TO EVERY

PROBLEM YOU ENCOUNTER

JANUARY IS BIRTH DEFECTS

PREVENTION MONTH.

Once again, the Spina Bifida Association of the

Tri-State Region has bookmarks available that are

designed to inform the public of the importance of

folic acid to help with the prevention of

Spina Bifida, and to raise general awareness.

If you participate in a public event and would like

to be able to hand them out, call the office and we

will supply you with an appropriate quantity. Ideas

for distributing might include girl scout cookie

sales, doctors' offices, book sales, libraries,

community events, baby showers,

and bridal showers.

PROBLEM SOLVING & BEING PART OF THE SOLUTION

Life is not very neutral. You can't really not take part and just watch the

world go by. You are either part of the problem or part of the solution.

Let's adopt the attitude for the new year to be part of our own solution. We

don't have to solve the problem, just be part of the solution. How many

people actually take a substantial portion of their day to be part of the

solution to their own lives. Most people seem content

to complain, endure and ignore instead of taking charge and making things

better.

That sentiment aside, what can you do and how much time are you willing to

give to solve the problems

in your life? Ten minutes, ½ hour, an hour, every day? Compare that to how

much time you watch TV,

talk on the phone, snack on junk food, or shop.

Before you can be part of the solution though, you must understand and

dissect the problem. That is

actually the first step to being part of the solution: correctly identify

the problem. And I just want to

briefly mention that sometimes it is not about the solution, as Shimon Peres

once said, " If a problem

has no solution, it may not be a problem, but a fact - not to be solved, but

to be coped with over time. "

Also, most people don't realize that problem solving is not a one-action

thing or a one-time attack. As the years have gone

by, I have learned that you can approximate a solution the first time around

and it is perseverance and patience which allows

you to maybe fine tune it a little more the second time around and to keep

trying until you get to the desired result.. Looking

for an absolute or simple fix is a fast way to give up on problem solving.

Being comfortable with approximations can help

you go much farther and also get used to changes or new ideas.

For example, let's say you have identified that you eat too much comfort

food and it is contributing to your being overweight..

And upon examination, you have discovered that you do this because you are

lonely and bored. So you come up

with the solution of addressing your loneliness and boredom by participating

in three social activities a week.

You plan to sign up for a telegroup, participate in an adult-ed class and

join an online chat room. Here is what happens:

Week one: 1)Telegroup-You remember the date at the last minute. You dial-in

half an hour late. You're too scared to talk

to anyone. You listen for 15 minutes and you hang up. You didn't really

accomplish what you had set out to do, but you

didn't realize how difficult it might be and how shy you would feel, but you

did make effort towards the solution.

2)Adult-Ed Class-You got lost on the way there. You found the room, but then

chickened out and drove home. Again, all

steps towards the goal. You now know where it is, and where the room is. It

will be easier next time.

3)Online Chat Room-You went on the web. Your first investigation led you to

a message board, not really what you

wanted. Then you found some free chat rooms, but found the sign-in process

confusing and overwhelming. Logged off.

No great successes, but what you were doing was going towards the solution

not adding to the problem. You snacked less

and did some things out of your pattern.

Week two: 1)Telegroup-This time you wrote on the calendar and had a sticky

note on the refrigerator. You started on

time, introduced yourself and then didn't say another word the entire time.

Learned some interesting information.

2)Adult-Ed Class-You made a point of leaving early to get there on time. You

found the room and said hello to three people.

Sat in the back and didn't say another word the whole time. Got some great

ideas and tips for a new hobby.

3)Online Chat Room-You went on the web and googled chat rooms. Read about

how to sign up three times and managed

to set yourself up on a chat room about movies. You hadn't seen the movie

being discussed and gave up after 10 minutes.

You didn't actually spend that much time in direct contact with others, but

you did spend more time being around others.

You learned a few new things and spent less time sitting around being lonely

and feeling sorry for yourself.

Week three: 1)Telegroup-You marked the calendar and used the sticky note

again. You started on time and were determined

to participate in some way. Someone else mentioned the very same pain issue

you were experiencing. You spoke up,

shared your feelings, and found out you weren't the only one. You also got

some very good information on how to take action

regarding your pain.

2)Adult Ed Class-You arrived early and were able to join in on a lively

discussion while doing a project. You had short

conversations with to new people.

3)Online Chat Room-You went to the movie chat room at a different time of

day. You could just log on because you figured

out how to sign-in previously. The discussion was about a movie you really

liked and a very controversial actress with

lots of interesting gossip. You had fun.

Being part of the solution takes perseverance, patience, being comfortable

with approximations, and effort. It does not necessarily

require solving the problem, just helping to solve the problem. It is better

to create a small step towards being part

of the solution then doing nothing or adding to the problem. You can make it

your goal to become conscious of all your

actions and decide whether they further solutions or further problems. It is

easy to complain that things stink and nothing is

any good, but what can you do to make things better?

Filling in the Gaps.

by Lea Plummer

HEALTH TIPS SELF-CARE

Let's face it. Living with Spina Bifida, or any disability for that matter,

isn't easy. There are more physical, emotional,

neurological, pain, and mobility issues to contend with then the average

person. But feeling sorry for yourself, or saying

it is just too hard, or what difference does it make will only make life

harder for you and the people around you.

Everyone has a responsibility to take care of themselves to the best of

their ability. To not do so is selfish and selfindulgent.

To not do so is to be part of the problem, not the solution. It is a waste

of what you do have. Individuals with

Spina Bifida and the people who care for them, need to be stronger, more

diligent, and exercise a lot more self-care.

The truth is more time and investment is needed to take care of the body and

mind just to avoid additional medical

issues. This applies to caregivers too!

Plan to do daily self-care. Build the time into your routine to take care

of the required tasks to maintain good health. Write down a schedule

that includes time for exercise, skin examinations, preparing nutritious

food, bowel & urological care, stretching, proper rest, and relaxation.

Listen & pay attention to your body. Our bodies give us information

all the time. Pain is a signal that something needs attention. Skin color

indicates oncoming infection or general health status. The color of urine

can help determine level of hydration. Fatigue tells us we need rest.

Communicate to others until they get the message. Tell your doctor,

caregiver, and people close to you, what you need even if they don't

think it is important. Discuss items that concern you. Don't be pushed

around or dismissed. Don't be apathetic and give-up because it is hard.

Listen to health-care providers and family even if you don't like

what they have to say. Instead of resisting or being stubborn, try to step

back and really consider what others are saying to you about your

health. Try to accept and embrace the truth of the self-care required.

Give up bad habits. If your system is already compromised, bad habits

are just going to make things worse. The pitfalls of smoking, drinking

alcohol, being stressed-out and eating processed high-fat or sugary junk

food are all compounded by poor mobility and poor elimination.

Don't be lazy. Laziness goes hand in hand with poor self-esteem and is

probably the root of most poor self-care. You are worth the effort! You

are worthy of being cherished, listened to, and cared for by the most

important

person in your life-you!

Transition - the process of change from one form, state, style or place to

another.

Most parents prepare and anticipate their child transitioning from childhood

and dependence to adulthood

and independence. At first, we might think, " get a job and leave home " . But

it is not as simple as

that. Each child transitions differently and to a different extent. Some

children never leave home.

Some children never get a job. We might start out with black and white

ideas, but the real world often

forces us to see grey. The real world may constantly ask us to redefine our

ideas and beliefs.

Children with disabilities, both physical and cognitive, usually take a

different path than many other

children. More advanced planning and use of supports and resources is

required. Transitioning can

be a difficult process for any parent and child, but it is even more

difficult for the family with a disability.

Parents are used to providing so many of the needs of a child with a

disability and for so long,

that it is a more difficult process for the parent and child to separate and

allow other people to perform

various aspects of support. Nevertheless, it is a crucial step in

transitioning to allow other people

to be closely involved with the fostering of the child's independence.

Advanced planning and use of supports and resources are key elements to

increasing the chances of

a child with a disability (or any child for that matter) reaching their full

potential and transitioning to

independence and adulthood. Planning is crucial and a parent can never start

too early. Part of planning

is to take a situation ,event or habit and expand it out several steps into

the future. Take a look at

the possible outcomes of what is going on now in the present. The question

can be asked, " Is this

habit or situation going to ultimately help or hinder my child's path

towards independence? "

For example, many parents want to compensate for a child's hardships or

struggles and often want to

" spare them the pain " . They want their child's life to be easier, so the

parent might bend over backwards

to assist the child. While most parents understand that children must endure

some " bumps

and bruises " to become more competent and independent, the parent of a child

with disabilities is

much more hesitant to allow this to take place. Awareness of their

vulnerability can make a parent

overprotective and over-helpful. This will do the exact opposite of

fostering independence. And in addition,

the child will sense the parents' fear and concern and will often embrace it

to the point of becoming

apathetic or immobilized.

The parent must learn and plan for their child experiencing difficulty. They

must develop

an acceptance of seeing their child struggle and a commitment to fostering

independence from early childhood. Learning to handle and overcome hardships

is a skill that will help any child get through life. The earlier this

process begins the easier it will be for a child to transition to adulthood.

REAL LIFE STORIES: Dan, a member of SBATSR, is 21 years old and

just started attending community college. Dan uses a wheelchair and has a

service dog, Kisses. Dan stayed in high school until he was 21. He

has always wanted to go to college and his dream is to be a sports announcer

for radio or TV. Dan is eligible for services from the Division of

Developmental Disabilities and it was decided that he would participate

in the Real Life Choices program. For more information about this program,

please

contact the office at info@....

Tools that make a big difference to Dan while attending college include:

*Kisses, his service dog, who is very helpful with reducing anxiety

especially in public places, building social

confidence, and companionship, in addition to helping with physical tasks.

*A laptop computer, which helps with organization and comprehension by

combining text with speech.

*An aide, Andre, who helps with studying and also serves as a social

intermediary.

Dan's mother has noted that Dan has just blossomed since attending community

college and Real Life Choices

is a really important support structure that removes some of the pressure

from the parent and also starts the

process of parent separation, learning to get assistance from other people

and developing more independence.

TRANSITIONS

REAL LIFE STORIES: If you would like to share your experiences or comments

about transition in the EZ, please

contact Lea at SBATSR. You can email at info@..., or call

908-782-7475. You can also write Lea at SBATSR,

84 Park Avenue, Suite G-106, Flemington, NJ 08822. We want to hear from you!

RESOURCES

KNOW YOUR RIGHTS AS AN AMERICAN WITH DISABILITIES

http://www.usdoj.gov/crt/ada/adahom1.htm

Information and technical assistance on the American with Disabilities Act.

There is nothing like knowledge and education when it comes to self-care and

self-advocacy. If we

are well-informed we are more able to help ourselves and to teach others how

to help us. Please

see the resources listed below to assist you in becoming more informed on a

variety of topics such

as: legal rights, employment rights, health issues, education and more.

NATIONAL ORGANIZATION OF DISABILITIES-EDUCATION SECTION

http://www.nod.org/index.cfm?fuseaction=Page.ViewPage & PageID=21 &

Includes articles, information, programs and links concerning education and

disability.

OFFICE OF DISABILITY EMPLOYMENT POLICY

http://www.dol.gov/odep/

Offers information on employment policies, support for employment, and

different programs.

SELF MANAGEMENT: TAKING CHARGE OF YOUR HEALTH

http://familydoctor.org/online/famdocen/home/healthy/prevention/785.html

Information and how-to on managing chronic illness.

KNOW THE SYMPTOMS OF SHUNT MALFUNCTION: HYDROCEPHALUS INFORMATION SHEET

http://www.divideclassic.org/Documents/ShuntInfo.htm

An extensive information sheet that discuss the symptoms and complications

of shunt malfunction.

KNOW THE SYMPTOMS OF URINARY TRACT INFECTIONS

http://www.emedicinehealth.com/urinary_tract_infections/article_em.htm

An informative article discussing causes, symptoms, treatment, and

prevention.

FAMILY SUPPORT CENTER OF NEW JERSEY http://www.fscnj.org:80/

Offers extensive up-to-date information on disabilities, support services

and programs for

families in New Jersey.

INFORMATION & RESOURCE SERVICES FOR NYC FAMILIES THAT HAVE

CHILDREN WITH SPECIAL NEEDS

http://www.resourcesnyc.org/rcsn.htm

NEW YORK STATE: Description of family support services to help families care

for members

with a disability.

http://www.parenttoparentnys.org/PDFs/Family%20Support%20Services%

20through%20NYS%20OMRDD%20%20Dec%202005.pdf

UNDERSTANDING STRESS: Signs, symptoms, causes, and effects.

http://www.helpguide.org/mental/stress_signs.htm

OTHER AVENUES..

Tune into DisabilityNation,

an audio magazine by and for

people with disabilities. The

goal of DisabilityNation is to

provide listeners with an alternative view other

than mainstream media of disability issues.

More information can be found at

http://www.disabilitynation.net

Inquiring Minds Want To Know.

If you receive disability benefits from the Social

Security Administration, and are interested in

working or learning more about how working

would affect your benefits, you can get help from a

community organization known as a Work Incentive

Planning and Assistance (WIPA) project. Go

to http://www.socialsecurity.gov/work/

ServiceProviders/WIPADirectory.html#service

and find out more.

THE DANNY FUND: Help available for families of children who reside in

Pelham, Rye Brook, the Bronx, or White Plains, New York and are living

with a catastrophic illness or injury.

The Danny Fund, a 100-percent volunteer Westchester-based non-profit

organization, learns about potential

Danny Kids through referrals from physicians, neighbors, healthcare

organizations, social workers, etc. The

group adopts a family for the long haul and provides ongoing support as it

is needed. Typically, initial support

is broad and represents significant expenditures. As time passes and the

financial problems stabilize, the

amount of support diminishes.

To nominate a local child in need, please write to: The Danny Fund

(Please note that nominations cannot be accepted through the website or over

the phone) PO BOX 271

Pelham, NY 10803

FIND WAYS TO SERVE IN ADDITION TO

RECEIVING SERVICES

Comprehensive website for people with

disabilities provides leading one-stop federal

source for disability-related information.

The 50 million Americans who are living with

disabilities will have an easier time learning about and participating

in national service and volunteer programs thanks

to new initiatives implemented by the Corporation for National

and Community Service.

The Corporation is the latest partner in DisabilityInfo.gov, a

collaborative effort among 22 federal government agencies.

The site provides information on benefits, civil rights, community

life, education, employment, housing, health, technology

and other subjects. The Corporation will be providing content

about service and volunteering opportunities, grants, special

initiatives, and training resources geared to including people

with disabilities in service. " Volunteer service connects

people with disabilities to skills, networks, and career

paths that can bring added value to their lives. "

National Job Site Dedicated to

Including Individuals with Disabilities into

Today's Workforce

The website,

www.AccessibleEmployment.org, is

designed to provide employers with

one central place to post employment

positions and search resumes

of qualified candidates with disabilities.

In addition,

www.AccessibleEmployment.org

allows potential job candidates to

post resumes for prospective employers

who are looking for

qualified

candidates and who

are committed to

building diversity in

their workforce.

OTHER AVENUES..

Small changes can make big differences.

Oil prices are on the

rise, but you can help your purse

and the environment by installing

a programmable thermostat. This little investment

will pay for itself many times. Why pay for

heating or cooling when you are not home or are

asleep? A programmable thermostat can be set

up to adjust the tempature according to your

daily schedule. If you are not home, drop it down

by a few degrees in winter and raise it up a few

in summer. This winter, see if you can handle 1

or 2 degrees cooler than last year. Use a

sweater, wear a hat, or do some physical activity

before you turn up the thermostat. Remember

we pollute not only by burning oil, but by transporting

it from refinery to retailer to homeowner.

HELP BIG MOMMA

FREE HEALTHCARE RECORD-KEEPING NOTEBOOK

In caring for your child with special health care needs you will receive

information from many

sources. This Health Care Notebook will help you organize information in one

central place. It

will help you track changes in medication/treatments and have a place where

you can look up

previously used health care professionals (i.e. speech therapist from Pre-K,

first ENT, etc.). It

will be a place to keep phone numbers, doctors, locations of testing,

vendors of durable medical

equipment, serial numbers, etc., authorizations/approvals in one place

rather than in

envelopes and boxes under beds.

An easy to use notebook for parents to document an ongoing record of their

child's medical and health

care. See

http://www.parenttoparentnys.org/Family2Family/Record%20Keeping/notebook.htm.

This

notebook is free and is downloadable in English or Spanish. To obtain: write

or call

Janice Fitzgerald

PO Box 1296

Tupper Lake, NY 12986

518-359-3006

p2pnys@...

A life lived of choice is a life of conscious action.

A life lived of chance is a life of unconscious

creation.

- Neale Walsch

Right Under My Nose is an online book created to help children with

spina bifida understand their condition, discover new ways to enrich

their lives and help their parents and caregivers answer many of the

tough questions that arise.

With a fully interactive story, activities, tips, and a printable version of

the whole book, this site is intended to be educational and fun. English &

Spanish

Available. Enjoy! Go to

http://www.childrenshospitalla.org/spinabifidabookeng/

LifeNets-The Wheelchair Project

LifeNet's Wheelchair Project is for those

living in the United States. The program

is designed to facilitate the exchange of

wheelchairs between individuals.

The goal of LifeNet's Wheelchair Project is to put

wheelchairs that are not currently being used into

the needed hands of someone who cannot afford or

qualify for them. This site is like the match.com of

individuals and wheelchairs.

Go to http://www.lifenets.org/wheelchair/

To donate your wheelchair or if you need a wheelchair

please contact Alix Kubik at

alix@... or call at

317-536-5219 (Monday through

Friday 9 to 9 Eastern Time).

Everything You Wanted to Know About Spina Bifida, But

Didn't Know to Ask...

When a person has Spina Bifida, it is almost always detectable that the he

has a physical disability.

This obviousness very often overshadows the important fact that Spina Bifida

also

usually includes cognitive or neurological issues which can impair the

individual just as thoroughly

as the physical impairment. Because of good verbal skills, the general

public assumes

that a person with Spina Bifida only has a physical impairment. Therefore

expectations that

the individual with Spina Bifida has specific consistent cognitive skills

can be unrealistic and

may lead to frustration, impatience, and an inappropriate assessment of the

individual's abilities.

The individual may begin to have poor self-esteem, anger, and frustration at

not being

able to perform at expected levels.

" Individuals with meningomyelocele often have abnormalities such as Chiari

type II malformation,

hypoplasia (incomplete development) of the cranial nerve nuclei, thinning of

the posterior

cerebral cortex, and abnormal architecture of the corpus callosum and other

midline structures.

Most individuals (80%) with meningomyelocele have intelligence in the normal

range,

yet they often have specific learning disabilities. Typically they are

stronger in language and

weaker in perceptual and motor skills. Older research has documented that

individuals with

meningomyelocele have lower nonverbal than verbal IQ scores, with verbal IQ

scores often in

the average range. They have difficulty with pragmatic communication, e.g.,

they use and understand

single words but have significant problems with language at the level of

text and discourse.

They demonstrate significant problems with short-term memory, especially

list learning.

They often appear to have problems with attention and executive function;

however,

evaluation of their memory, attention, and executive functions may reflect

difficulties with

other core processes. The neuropsychological challenges of meningomyelocele

are present

early in life, are comprehensive in nature, and are a significant impediment

to academic

learning, social competence, and adaptive functioning throughout the life

span. Thus, they

directly impact the long-term outcomes and level of independence of

individuals with meningomyelocele.

In school, math is commonly impaired more than word recognition skills, and

problems with writing and reading comprehension are common. Neurological

impairments can

affect learning outside of school as well in areas such as self-care, social

skills, and adaptive

behavior skills. The relationships among learning, achievement, motivation,

and learning outcomes

appear to be complex. " 1

" Parents, observant teachers, and health care professionals have observed

that individuals with

Spina Bifida have problems with motor skills, attention, memory and

organization. Research

linking medical aspects of Spina Bifida and hydrocephalus to scores that

test intelligence and

academics concludes that children need to be evaluated psychologically and

neuropsychologically

to identify individual strengths and deficits. Even when not considered

learning disabled

by state or federal guidelines, learning weaknesses exist in individuals

with Spina Bifida.

The following eight areas describe some of these weaknesses and offer

suggestions for helping

persons with Spina Bifida:

Comprehension

Individuals with Spina Bifida sometimes have a hard time understanding

concepts.

Perceptual Motor Problems

Often, individuals with shunted hydrocephalus have poor eye-hand

coordination and

ineffective motor skills among individuals with Spina Bifida, interfere with

the ability to

move, use tools, read and write.

Attention

Individuals with Spina Bifida often have trouble paying attention at school

or work where

they may miss assignments, complete work slowly or overlook social cues. If

attention

problems continue, it may be necessary to conduct evaluations for attention

deficit and perhaps

consider a therapeutic trial of medication.

Hyperactivity/Impulsivity

While physical impairment may mask the restlessness, children with Spina

Bifida often appear

fidgety and impulsive. This behavior can get the children into trouble

because they

end up doing things quickly and carelessly. As with inattention, if these

behaviors continue,

a psychologist, pediatrician or neurologist should evaluate the children.

Memory

Even when individuals with Spina Bifida understand what they see or hear,

they often have

difficulty remembering.

Organization

Individuals often have trouble keeping things organized and are likely to

lose or misplace

things.

Sequencing

Individuals with Spina Bifida often have trouble keeping ideas or doing

activities in their

proper order. Good stories that can be told in an orderly way may not easily

be written

down because children cannot organize ideas. Sequencing problems become

obvious when

doing math, telling time and counting change.

Decision Making/Problem Solving

Persons with Spina Bifida have trouble making decisions, which requires

using what was

learned in the past to solve a new problem now. If there comes a time when a

child appears

to not improve their problem solving or decision-making, contact

professionals. " 2

" Despite patterns that individuals with meningomyelocele share in common, a

great deal of

variability occurs in individuals. These difficulties emerge early in

development, can be

modified by experience, persist across the life span, and are related to

genetic factors, level

of the lesion, and neurological abnormalities. The relationship between

anomalies in brain

structure and the core processing deficits, as well as the relationship

between core processing

deficits and functional outcomes over the course of development, are not

well understood

now. " 3

REFERENCES

1. " Neuropsychology and Learning " . Spina Bifida Association.

http://www.sbaa.org/site/

c.liKWL7PLLrF/b.2700285/k.BD6D/Neuropsychology_and_Learning.htm

2. " Learning Among Children with Spina Bifida " . Spina Bifida Association.

http://www.sbaa.org/

site/c.liKWL7PLLrF/b.2700281/k.E95C/Learning_Among_Children_with_Spina_Bifida.ht\

m

3. " Neuropsychology and Learning " . Spina Bifida Association.

http://www.sbaa.org/site/

c.liKWL7PLLrF/b.2700285/k.BD6D/Neuropsychology_and_Learning.htm

WHAT'S HAPPENING AT SBATSR

SBATSR HOLIDAY PARTY

WHAT'S HAPPENING AT SBATSR

January Teleconferences

*Golden Girls: 1/2

8PM with Krul

*Men's Group: 1/22

8PM w/ Horowitz

*Eclectic Women: 1/22

7:30PM with Carla Heath

*Parents of Adults: 1/23

8:30PM with Jane Horowitz

February Teleconferences

*Golden Girls: 2/6

8PM with Krul

*Parents of Adults: 2/26

8PM with Jane Horowitz

*Men's Group: 2/26

8PM w/ Horowitz

NO Eclectic women

BELOVED SBATSR MEMBER PASSES

AWAY

On November 11, 2007, Eileen Lyden,

resident of View Nursing Home

and long-time member of SBATSR passed

away. Eileen was a great inspiration to many. She was

a vital person who never let anything keep her down.

Her activities ranged from being a professor at several

different colleges, a successful saleswoman and trainer

of computer software and financial services, to a founding

member of a small resident run convenience store

at the nursing home where she lived. Her lively spirit

and willingness to get involved made her a special person

loved by many.

SHOPRITE AND SBATSR ARE WORKING TOGETHER TO

PROMOTE FOLIC ACID THRU COOKING CLASSES AT

PARTICIPATING SHOPRITE LOCATIONS

Clinton Shoprite January 10 and January 31 7PM

Must call HMC's Hunterdon Nutrition and Diabetes Management Center for

reserving a

spot for the cooking class 908 237-6920

Greenwich/burg Shoprite January 24 7PM

Call Shelia at the store to reserve your cooking class spot 908-454-8086

Thanks to all those members

who sent in there 2008

membership dues!

For those of you who haven't

sent in their dues, don't lose out!

Join now! Deadline is March 14.

See the enclosed form or go to

the following link:

http://www.sbatsr.org/objects/

GeneralMembershipForm2008.pdf

MEETING DATE FOR THE

BRONX SPINA BIFIDA

ADULT GROUP

January 12, 10am-12pm

THE KENNEDY CENTER

1410 Pelham Parkway South, NY

For more info,

call Lourdes 1-646-404-0864

WHAT'S HAPPENING AT SBATSR

Name: ___________________________Phone: ________________________ E-mail:

______________

Address: __________________________ City: ___________________ State:

_________ Zip:________

I am interested in joining the: _____________ committee and can commit to at

least _________

hours for the year on planning. This includes conference call meetings and

outside solicitation.

SBATSR will be hosting a " Culinary Wine and Food Tasting " Event

on October 23, 2008 at the Basking Ridge Country Club.

We are looking for committee members to join our event planning committee.

Committees Include:

· Silent Auction

· Registration

· Vendor Logistics

· Raffle Prizes

This is a great

opportunity to

volunteer your time if

you love food and

wine events!

For more information,

please contact

events@...

Or call 908-782-7475

Please fill out this form and mail back to:

Spina Bifida Association of the Tri-State

84 Park Ave, Ste. G-106

Flemington, NJ 08822

Att: Culinary Food and Wine Committee

Save The Date!

The Spina Bifida Association of the Tri-State

Regional Conference 2008

When: Saturday, May 31st - Sunday, June 1st

Where: The Lakeview School

10 Oak Drive

Roosevelt Park, Edison New Jersey 08837

Join Us for a weekend of

.. Workshops . Seminars

.. Vendors and Demos . Networking

· Make new friends! . Reception Party!

Childcare programs will be available

Bring the entire family for this two-day informative event

Visit http://www.sbatsr.org/events/2008.html for more information

Registration packets will be mailed out in March, 2008.

Please save the date!

WHAT'S HAPPENING AT SBATSR

Customized cards for any occasion. You can pay by check or credit card.

Just call-in the information at 908-782-7475 or email info@... and we

will mail a customized donation card to the person of your choice. Gift

amounts must be $20 or more and are tax deductible.

MORE SAMPLES AVAILABLE

Spina Bifida Association

of the Tri-State Region

84 Park Avenue, Suite G-106

Flemington, NJ 08822

Each new day is a blank page in the diary of your life. The secret of

success is in turning that diary into the best

story you possibly can. Pagels

(If you have sent in your 2008 membership form please disregard this notice)

The EZ is always available in full color at

http://www.sbatsr.org/living/newsletters.html.

DO YOU WANT TO RECEIVE THIS PUBLICATION?______

DO YOU WANT TO RECEIVE IT VIA AN EMAIL ATTACHMENT? ______(in full color)

DO YOU WANT TO RECEIVE IT IN THE MAIL?________

DO YOU WANT TO RECEIVE A LINK TO SEE IT ONLINE? ______(in full color)

PLEASE PRINT SLOWLY AND CLEARLY SO WE HAVE THE

CORRECT INFORMATION!

Yes, I want to help support the production and distribution of this

newsletter by making a donation in

the enclosed envelope.

I am unable to make a donation at this time, but I would like to remain on

the EZ mailing list.

EMAIL:______________________________PHONE:_____________________

If you or a family member does not have spina bifida, please check the label

below, make any

corrections necessary, add additional contact information, tear off this

page and mail in the

enclosed envelope. To use email go to info@... and send corrected

information.

If you or a family member has spina bifida, please fill out the inserted

form and return in the

enclosed envelope and we will keep you on the mailing list. For the online

form go to http://

www.sbatsr.org/objects/GeneralMembershipForm2008.pdf and send email to

info@....

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