Spina bifida is one of the most devastating of all birth defects and it affects approximately one out of every 1,000 newborns in Massachusetts. A neural tube disorder that is both genetically and environmentally determined, spina bifida can cause complex and serious health issues in numerous systems within the body. Children born with spina bifida may need multiple surgeries and other extensive medical care throughout their lifetimes to address orthopedic, urological, neurological and other issues. However, thanks to advances in medical technology, most children born with spina bifida today live well into adulthood and are thriving members of society.

As with any other complex health issue, spina bifida comes with its own set of social, educational and psychological challenges. For families and individuals dealing with the complexities of living with spina bifida, there is a tremendous need for a community dedicated to providing support and information to its members. Every parent, every sibling and every individual impacted by spina bifida has a need, at some point, to commune with others in their same situation.

That’s who The Massachusetts Spina Bifida Association is: A community of support for a large group of Massachusetts residents who sometimes need an empathetic ear or a voice of advocacy. We are staffed entirely by volunteers dedicated to supporting our mission. We work efficiently to provide support where it is needed most and we are doing our best to raise awareness about spina bifida in our region.

The Massachusetts Spina Bifida Association is dedicated to helping individuals with spina bifida in the Bay State achieve their maximum potential. A member of the Spina Bifida Association of America, the MSBA was founded in 1973 to promote the prevention of spina bifida and to enhance the lives of all affected by it.

The MSBA provides support, education, financial assistance and information for Massachusetts children and adults with spina bifida, the most common permanently disabling birth defect in the U.S. today. The MSBA organizes educational programs/speakers, provides equipment and/or equipment financial assistance, maintains a “Teen and Young Adult” program, sponsors youth camperships, and administers a “Parents Helping Parents” program for families and individuals affected by spina bifida. Our MSBA NEWS and regular social events are the foundation for the spina bifida community in Massachusetts.

Each of the runners for the MSBA Boston Marathon team (Team MSBA) has been selected for their commitment to our cause, as well as their commitment to do their best on the course. Our 2003 team is comprised of 20 members willing to dedicate significant training and fundraising time to the program. We try to foster an open, informal spirit and encourage interaction among our runners to share ideas on successful fundraising and training programs.

Again this year, the Team MSBA will be training alongside the Children’s Hospital Kids At Heart 2003 Boston Marathon Team. Those of you who trained with this group last year can attest to the wonderful camaraderie and spirit these runs provide. Most long runs (Saturday mornings) and many weekday runs take place on the marathon course itself, which provides invaluable experience for race day.

We are also happy to announce that eight-time winner of the Boston Marathon and adult with spina bifida, Jean Driscoll will again assist in our planning, motivational, awareness and fundraising efforts. Last year’s appearances and functions with Jean were truly inspiring, and her community outreach on our behalf was critical. Jean has again agreed to provide guidance and insight into our program efforts both personally and through her extensive network of corporate, charity, civic, athletic and media contacts in the Boston area. Jean will again provide motivational appearances for our team and we hope to have her mention Team MSBA on her race-day color commentary on WBZ-TV (Channel 4) in Boston. As a true hero of the Boston marathon, Jean’s support for the MSBA Boston Marathon Team is invaluable.

Funds raised in this year’s program will allow for the continued expansion of our peer resource initiative among the spina bifida community called the Parents Helping Parents program (PHP). When complete, the PHP program will comprise a statewide network of trained parents who can share their own experiences and practical insight on issues facing families with spina bifida. Working in concert with Children’s Hospital Boston, the MSBA has made this network available to parents who have been recently informed that their in utero child has spina bifida. The pilot program aims to provide a real, live human resource to help new parents better understand what raising a child with spina bifida may be like and will be the basis for our statewide initiative. Also, funds will help with the ongoing administration of our Teen and Young Adult program, a member-driven effort that provides a supportive community during the typically difficult transition years to adulthood. Finally, funds will support the MSBA’s ongoing commitment to fund camperships and provide equipment assistance to its members in need. Last year’s fundraising allowed the MSBA to double the annual funds available to families-in-need to $500 and create a special $1,000 Jean Driscoll Scholarship.

As a 2003 Boston Marathon Charity Organization, we will succeed at raising our goal of $100,000. More importantly, we will motivate our runners, our backers, the spina bifida community and the community at large to take a good look at the incredible work a few motivated people can accomplish.

We are proud to welcome you to our team, and thank you for your dedication to our cause.