Message from the Executive Director

By Diane Burns

The new decade holds many opportunities for our organization to continue to develop and expand, thanks to your support and participation.

With the increasing success of the Walk and Roll, we reached a milestone of over $100,000 in cash revenue last year. This allowed us to achieve one of the objectives we set forth early in 2009; to lease our first office. We moved in to a 500 square foot space in the Holiday Office Park just west of downtown and are now open for business. The building is home to several other non-profits, including the Down Syndrome Association and the Alzheimer's Association, with the ARC of Hamilton County located in the adjacent building. We encourage you to stop in for a visit or schedule some time to volunteer. Thanks to Cincinnati Bell Telephone and Loth Business Furniture for the donation and installation of office furnishings and Dan Sellet for his time painting and helping to prepare the office space for occupancy.

The new office allows us to meet another goal, as we now have space for staff. We are currently looking to hire an administrative assistant for (2) 5 hour days a week, perfect for a parent who would like to work a couple of days during school hours. Responsibilities will include data entry and management, correspondence, meeting and event preparation, and assistance with creating the newsletter and maintaining the web site. If you, or someone you know, is interested in this part-time position, please go to the SBAC web site to see the job posting.

We are now offering more programs than at any time in our history. The Young Family Support Group continues to increase in size and activity. They meet once a month at Children's Hospital Mason and Liberty Township facilities, as well as a few nights scheduled throughout the year for moms and dads to go out for dinner. The annual picnic, as always, will be the highlight of the year.

The Young Adult Tele-program began a nine-week session in January with a group of adolescents and adults with Spina Bifida from across the country, to explore strategies for success in transitioning to and maintaining a healthy and productive lifestyle. "Special Topic" discussions will supplement this program throughout the year with guest speakers.

On the topic of transition, a local task force has been formed to look at how we can improve the way young adults transition from living at home to more independent or community living. The team includes staff from Cincinnati Children's MM clinic, adults with Spina Bifida, representatives from Hamilton County Developmental Disabilities Services, parents of adults, and professionals that have worked in assisted living facilities. In addition, Gail Frickman is representing our needs on the medical transition task force hosted by Cincinnati Children's and partner, University Hospital, to look at new models for transitioning individuals with a childhood-onset disease or condition from pediatric to adult health care. They look to produce transition of care plans for 9 conditions, (including SB) by early June.

2010 brings the national Spina Bifida Conference to Cincinnati in June! The conference has not been to our fair city since 1985. A SBAC task force is working with the national conference planning team to provide hospitality and local volunteers for the event. If you are interested in volunteering for the conference, please contact our office. We will be post-poning our regional conference scheduled for 2010, as well as cancelling Family Camp for this year, in an effort to conserve resources for the national conference.

As we move forward in the new decade, join us in celebrating our success. Attend programs, apply for scholarships and when able volunteer and give back so that we can continue to promote the prevention of Spina Bifida and enhance the lives of all affected well into the future.