Programs and Services

SBA Conference Scholarship:

The goal of the Conference scholarship Program is to encourage individuals and families to attend the annual SBA Conference. This event provides a great opportunity to meet others living with Spina Bifida; learn more about living with Spina Bifida; make friends and enjoy seeing old friends; get away to a new city; share tips and tricks; learn the latest medical information from doctors and other experts; and have an amazing experience overall!

Mary Jo Dunleavy Conference Award:

The SBAGNE offers 2 - $1500 scholarships, as a tribute to Mary Jo Dunleavy, RN. During her career of more than 30 years at Children's Hospital in Boston, she worked at the urology and general surgery departments and as nurse coordinator of the hospital's Spina Bifida clinic. Mary Jo was a dedicated nurse and friend of the SBA GNE community. The award must be used to attend the annual SBA Conference and will be awarded to SBAGNE constituents, with Spina Bifida, who best demonstrate the commitment to maximizing the benefits of attending the SBA Conference.

Jean Driscoll Award:

The SBAGNE offers this $1000 award as a tribute to Jean Driscoll, an eight-time Boston Marathon Champion and adult living with Spina Bifida. The sbaMass is seeking to support an individual in “pursuing their passion” as Jean Driscoll has in her life. The award may be used for educational, developmental or assistive programs and needs and will be awarded to a SBA GNE constituent of any age, with Spina Bifida who best demonstrates the character and determination of the scholarship’s namesake.

Children’s Hospital Parking Pass Program:

Beginning in May 2011 the SBAGNE began providing parking passes to the Myelodyspalsia Clinic for distribution. Passes are only available on Clinic days. 10 passes are available weekly. Passes are distributed on a first come, first serve basis. If a patient has an appointment lasting less than 1 hour, a pass will not be provided. Passes can be obtained by contacting Maria Carvalho, Social Worker, Myelodysplasia Clinic.

Programs:

Information and Referral:

SBAGNE staff is available to assist you in identifying resources related to living with Spina Bifida. Email Ellen Heffernan-Dugan at edugan@SBAGreaterNE.org or call 888-479-1900. You will receive a response within 24- 48 hours.

Tweens Group:

The SBAGNE Tweens group (ages 6-12) meets approximately 4 times per year. Activities are generally social / recreational and provide an informal time for parents to talk and share.

Teens Group:

The SBAGNE Teens group (ages 13-16) meets approximately 4 – 6 times per year. Activities are varied, including social / recreational and educational. There may be a concurrent educational event for parents or an informal time for parents to talk and share.

Youth and Adults Group;

The SBAGNE Youth and Adults Group (ages 17+) meet approximately every 6 weeks. Activities vary and include social and educational events. If you have ideas for activities, places to get together, contact SBAGNE at 888-479-1900. Remember to watch your mailboxes and our website for more information about upcoming events. We hope to see you soon!

BLIN’G Weekend (Better Living N’Girls)

BLING is a Weekend for 10 - 15 tween and teens girls with living Spina Bifida ages of 12 -17 and a parent. The focus of the weekend is to build confidence in young woman living with Spina Bifida. Girls will be empowered through sharing their experiences, gaining self-confidence and receiving some healthy pampering. BLING Weekend was initiated to help adolescent girls learn to confidently embrace their abilities, individuality, and femininity. Children’s Hospital and SBAGNE work collaboratively to hold this weekend in Boston during February or early March of each year. The Inaugural Weekend was held in March, 2011 at the Omni Parker House, Boston.

BEST Weekend (Boys, Esteem, Success and Training)

BEST is a Weekend for 10 - 15 tween and teens boys with living Spina Bifida ages of 12 -17 and a parent. The focus of the weekend is to build confidence in young men living with Spina Bifida. The boys will be empowered through sharing their experiences, gaining self-confidence and athletic activities. BEST Weekend is being initiated to help adolescent boys learn to confidently embrace their abilities, individuality, and masculinity. Children’s Hospital and SBAGNE are working collaboratively to hold the Inaugural Weekend in the fall of 2011.

Clothing and Equipment Program:

The SBAGNE maintains a clothing and equipment sharing program. It is a vehicle to allow constituents to give clothing, shoes, equipment, etc. to others. Items that might be passed on include: shorter than usual pants, shoes without the innersoles, walkers that no longer fit an individual, etc...The rules for this program are simple but must be followed to maintain privacy for all involved:

1. Post an email on the SBAGNE Parents group or YAG Group. Or Maine Group offering free clothing, shoes or equipment to others and include as much information as possible;

2. Include your direct email address at the bottom of your offer;

3. Indicate if your offer is “all or nothing” as we do not want to make this a hassle;

4. Conduct all transactions within private emails;

5. Once the items are given away, do a quick email to the group indicating that the items are taken but do not mention the name of the person to whom they were given.

Please note that all constituents welcome to provide equipment listings for the SBAGNE Quarterly newsletter or web site. If you have any further questions, please call Ellen Heffernan-Dugan at 888-479-1900 or edugan@SBAGreaterNE.org

Illuminations:

Each year SBAGNE provides information to constituents at various stages in their development. Packets are distributed to children, in a year in which they “age up” and target issues that occur at prenatal diagnosis and birth (newborn – age 2), ages 3-5, ages 6-9, and ages 10-12 and the teen years. In addition there is information distributed to teens in the year they turn 16 to begin preparation for adulthood. These packets are designed to address the various challenges that occur in lifestyle and education at each of these important stages of life.

Social Events:

Summer Picnic: In July of each year SBAGNE hosts a summer picnic for constituents. The day includes lunch, activities for the kids, door prizes and the opportunity to gather with friends and relax. SBA GNE constituents and their families are all welcome to attend. Watch your newsletter and the website for date and location.

Holiday Party: Each year on the first Sunday in December, SBAGNE hosts constituents and their families at the Annual Holiday Party. Lunch is provided, entertainment, art and crafts for the kids, a Yankee Swap for adults and there is always a surprise visitor for the kids! Watch the newsletter and the website for more information

Maine Holiday Party: Each year in, SBAGNE hosts constituents and their families at the Maine Holiday Party. Lunch is provided, entertainment, art and crafts for the kids, a Yankee Swap for adults and there is always a surprise visitor for the kids! Watch the newsletter and the website for more information