BOARD MEMBERS

Executive Committee President Barbara Devore

Vice President Kevin Chamberlain

Treasurer Raymond Langelier

Secretary Catherine Wyszomirski

Shameka Andrews Michael Bromirski

Vanessa Chamberlain Jennifer Gallagher

James Gallagher

Hali Holmes Margaret Langelier

Karen Lawliss Stefon Stilwell

Jeannette Udwary Catherine Wyszomirski

CHAPTER MISSION

Spina Bifida Association of Albany/Capital District’s mission is to promote the prevention of Spina Bifida, and to enhance the lives

of those affected by the disability.

Paid membership is not a requirement for receipt of services.

123 Saratoga Road 518-399-9151 Scotia, NY 12302 SBAAlbany102@aol.com

www.SBAAlbany.org

Karen Wentworth, Executive Director

TABLE OF CONTENTS

ABOUT SPINA BIFIDA ……Page 2 TO MEMBERS & MEMBERSHIP…………….Page 2 STAKEHOLDERS ………….Page 3 2008 PROGRAM HIGHLIGHTS …. Page 4 SB AWARENESS……….....Page 5 FUNDRAISING EVENTS…...Page 5 FINANCIAL REPORT……..Page 6 BOARD NEWS…………… Page 6 CHAPTER VOLUNTEERS…Page 6

ANNUAL REPORT 2008

SPINA BIFIDA IS THE MOST COMMON PERMANENTLY DISABLING BIRTH DEFECT IN THE UNITED STATES .

THE EFFECTS OF SPINA BIFIDA ARE DIFFERENT FOR EVERY PERSON.

Spina Bifida occurs during the first month of pregnancy when the neural tube (spinal cord) is formed. In the instance of Spina Bifida, the spinal column of the baby fails to close completely creating an opening, or lesion, on the spinal column. Because of the opening, the nerves in the spinal cord may be damaged and not work properly. Surgery to close the spine is most often required and usually occurs within hours after birth. The effects of Spina Bifida are different for every person. It is a life-long disability with ongoing medical challenges. Up to 90% of children with the most severe

form of Spina Bifida have hydrocephalus

(fluid on the brain) and must have surgery to insert a “shunt”

that helps drain the fluid. Other conditions that are common for people with Spina Bifida include full or partial paralysis, nervous system complications, bladder and bowel control difficulties, learning disabilities, depression, latex allergy, and social and sexual issues.

Spina Bifida is the most common permanently disabling birth defect in the United States. An average of 8 babies are born every day with Spina Bifida or a similar birth defect of the brain and spine.

PREVENTION The exact cause of Spina Bifida is not known. Research studies have shown that taking 400 micrograms (mcg) of folic acid daily, before becoming pregnant and during the first 3 months of pregnancy, can reduce the risk of having a Neural Tube Defect affected pregnancy by up to 70%.

Chapter Board of Directors

At the Chapter Annual Meeting in October of 2008, the board was happy to welcome two new members to the group. Stefon Stilwell is a young adult and college student and brings to the board an understanding of technology and communicating with teens and young adults, as well as a growing expertise related to business. Karen Lawliss is a mom of a child with Spina Bifida and brings experience from serving on other not-for-profit boards. Karen has been volunteering her time to format the newsletter for over a year.

CHAPTER MEMBERSHIP Any person interested in promoting the purposes of this organization is eligible to become a member. Paid membership for 2008 received the benefit of a subscription to “Insights”, the magazine publication of our national affiliation, Spina Bifida Association.

2008 membership included 30% new members, 70% returning members, and an overall decline of 13%.

The mailing list for the chapter continues to grow. By the end of 2008, over 200 individuals, families, and interested community members and leaders were receiving the newsletter. The chapter donor mailing list increased to over 600 families at the end of the year.

About Spina Bifida…

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To Our Members & Stakeholders

2008 was a year of continued growth for Spina Bifida Association of Albany/Capital District (SBA OF A/CD). The chapter serves an ever-increasing number of individuals and families. The ages of constituents range from pre-birth/newborns to 65. There has been a trend for increased initial contacts from young adults and older. As the chapter staff and volunteers have become much more visible in the community, more individuals are aware of the services and support available and are contacting the chapter for assistance.

The heart of the organization begins with information disseminated to all registered constituents, as well as to smaller special interest groups (i.e. parents, young adults, preschool families, adult women). Information is provided to groups as much as possible, but is also offered on an individual basis.

The chapter publishes a quarterly newsletter and almost weekly e-news announcements which are directed to appropriate groups. In addition, during 2008, grant money has supported several mass mailings to parents of children with Spina Bifida. These shipments have included guide books related to health and wellness of children with Spina Bifida, as well as picture books for children that address issues and concerns particular to them written for their viewpoint. Finally, mailings have been sent out with complimentary copies of “Insights”, the magazine publication of the national Spina Bifida Association. These have been sent to new members of this chapter as well as to those who have not previously been members to familiarize them with a helpful national resource.

Much of the information distributed to constituents of the chapter is provided on a more individualized basis. Staff and volunteers respond to calls and emails regarding specific inquiries from individuals and family members. Concerns range from health care, education, transportation, employment, transition planning, accessible housing, and advocacy/discrimination challenges. The responses include providing appropriate resource materials and establishing mentoring or support contacts with others who have personal experience with the particular concern being addressed.

With an increase in requests for services, a part-time office assistant was hired for up to 10 hours/week. This person has been responsible for maintaining many of the business aspects of the chapter that can’t be addressed by volunteers. The chapter has a part-time Executive Director, as well as a core of per diem staff who teach the disability awareness program, “Challenges: Understanding People Who Are Differently-Abled.” An active group of volunteers work to provide and expand chapter programs and to fundraise money to address expenses.

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SB CAMPING WEEKEND AT DOUBLE H RANCH Campers experienced a Self-Defense Presentation, along with the high ropes course, swimming, fishing, boating, arts & crafts, pumpkin carving, and the traditional Halloween Party.

PRESCHOOL FAMILY PROGRAMS The chapter Preschool Family Program had an active year with two educational presentations for parents; Financial & Legal Planning for Individuals with Special Needs and Their Families, and Maintaining Health Care Records for Children with Complex Medical Needs. In addition, the group had a series of summer-time playgroups

ACCESSIBLE TENNIS LESSONS Held on Saturdays with summer, winter, and spring sessions, participants get a workout while learning the skills for the game of wheelchair tennis. Starting in March of 2008, lessons include the opportunity to use sport chairs designed specifically for tennis, thanks to a grant received from Christopher and Dana Reeve Foundation.

PREVENTION AWARENESS PROGRAM With a grant received from Spina Bifida Association, the chapter hired a Health Educator Consultant to develop a professional presentation and present prevention awareness programs. The purpose of the Prevention Awareness Program is to intensify the prevention efforts of the chapter, targeting audiences including people who are at risk, especially young minority women who live within a 60 mile radius of Albany County, and the professionals who serve them. Program presentations will begin in 2009.

HELEN R. MERTEN’S 2008 SCHOLARSHIP AWARD RECIPIENT The purpose of the Helen R. Merten’s scholarship is to award financial assistance to persons who have Spina Bifida and are pursuing higher education, technical training, or driver’s education. Congratulations to the 2008 recipient, Lyndsi Holmes!

DISABILITY AWARENESS 2008 has been the most successful year of “Challenges: Understanding People Who Are Differently-Abled” to date. An expansion of staff early in the year enabled the chapter to present 17 programs to a wide variety of groups; elementary school students, high school health classes, religious education students, community educators, childcare providers, counseling staff for children with special needs, and law students. It was remarkable to see the consistent positive feedback for the program as an educational tool to raise awareness about people with disabilities.

2008 Program Highlights

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SPINA BIFIDA AWARENESS

2008 provided many new opportunities for developing advocacy with New York State leaders, thanks to the generosity of Patricia Lynch Associates Inc. in Albany. With the assistance of their staff, chapter staff and constituents had the opportunity to meet with a wide variety of legislators and state agency staff. In addition, for the first time legislation was proposed in New York

State that was specific to the needs of individuals with Spina Bifida. Finally, February 26, 2008 was proclaimed Spina Bifida Awareness and Prevention Day in New York State. The proclamation was presented before both legislative houses, with legislators taking the opportunity to publicly discuss their interest and support of the SB awareness cause.

Chapter representatives with Assemblyman McEneny (left) and Senator Griffo (right).

Fundraising Events

SLAM DUNK FOR SPINA BIFIDA Held the evening of the finals for the NCAA Basketball tournament, participants enjoyed a buffet dinner and silent auction, followed by viewing of the game on large screens at the OTB Teletheater in Albany. The event raised $16,000.

SARATOGA DAY AT THE RACES Chapter members and friends spent the day at Saratoga Thoroughbred Race Track in the comfort of the Paddock Tent, raising over $10,000 to support chapter programs and services. Constituents watched a race named for SBA of A/CD from the winner’s circle. The event provided an opportunity to recognize chapter supporters, Assemblyman Felix Ortiz, Assemblyman James Tedisco, and “Wish Me Success” owners, Pam & Joe Petruska. The Petruska’s announced that they will now have two horses running for the chapter, “Wish Me Success” and “Seattle Brew.”

Heather enjoys the buffet lunch, while Mary shows the program

for the day of the races.

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Financial Report

SBA of Albany/Capital District’s fiscal year coincides with the calendar year.

With the addition of a chapter office and related costs, there has been an expected significant increase in expenses.

REVENUE 1/1/08 – 12/31/08 Contributions, Gifts, Grants $15,928 Investment Income 6,607 Fundraisers 26,129 Gain on Sale of Publicly Traded Securities 75 Total $48,739

EXPENSES 1/1/08 – 12/31/08 Administrative $21,165 Fundraising 7,559 Program 32,125 Total $60,849

Increase (Decrease) in Net Assets (covered by liquidation of investments) $(12,110)

STATEMENT OF FINANCIAL POSITION 12-31-08

Cash $11,184 Investments 154,298 Furnishings and Equipment, Net 13,442 Total Assets 178,924 Accounts Payable and Accrued Expenses 4,349 Total Liabilities 4,349 Net Assets $174,575

Founded in 1993, Spina Bifida Association of Albany/Capital District is a 501(c)3 not-for-profit organization.

Chapter Volunteers The chapter provides many of its services and activities through the use of an active team of over forty volunteers. In addition, most of the hours necessary to plan and execute fundraising are accomplished by volunteer efforts. Volunteer roles include:

o Board of Directors provides financial oversight, organizational planning, monitoring of chapter’s programs and services, and representation of the chapter in the community. Board members chair committees for support services, scholarships, health care delivery, and chapter development.

o Parents and adults provide information, contact and support for individuals and families requesting assistance.

o Volunteers work awareness activities in the community. o The chapter provides an internship site for Scotia-Glenville High School students who

perform clerical and office cleaning tasks. o Constituents, families, professionals, and community representatives provide the

majority of hours required to sponsor fundraising activities.

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