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36th Spina Bifida Conference

By Diane Burns

Fourteen from SBAC were among over 750 participating in this year's 36th Spina Bifida Conference in Orlando, Florida. The conference was held in conjunction with the 20th Conference of the International Federation for Spina Bifida and Hydrocephalus.

In the opening session, Joyce Jones, president of the Board of Directors of the national SBA, introduced the importance of advocacy to create a difference in the health and well being of individuals living with Spina Bifida. The CDC recently recalculated the estimated number of people living in the US with Spina Bifida which increased from 70,000 to 185,000! It is believed that 90,000 live with the most serious form of Spina Bifida, Myelomeningocele. (This number has been difficult to accurately assess, as few states record the number of Spina Bifida births each year). With this significant increase in our population, Joyce said we must work harder to meet the needs of our community, as "Today's advocacy efforts will lay the groundwork for improved quality of life in the years to come".

Scott Price, Esq., president of the Spina Bifida Foundation, asked that we think beyond ourselves, to those who aren't able to speak out. He feels that life can be distilled down to challenge and response. We must face the challenge of improving healthcare, education, employment opportunities and prevention by responding to our public officials with personal stories and hardships and ask them to make changes that improve health care and living conditions for individuals with chronic health issues and physical disabilities.

Change can come from spending as little as 15 minutes a month, confirms advocate for SBA from Drinker, Biddle, and Reath in Washington, DC, Ilesa Halpern Paul. Connecting with your local public officials through a phone call, attending a town hall meeting, or simply contacting your local representative through www.house.gov and sharing your concerns about the availability and cost of accessible housing and adequate healthcare for individuals with SB makes a difference. You can act now to ask for support of the national SB program, currently requesting $7 million dollars for research programs. SBA is also requesting continued funding for education about folic acid and it's role in the prevention of neural tube defects.

John Kemp, co-author of "Reflections from a Different Journey", addressed attendees of the celebration lunch on Friday. The disability community as a whole has been successful in advancing the fundamental rights of people with disabilities through the ADA, says John, and we now need to work as a cohesive force to advance economic goals to improve health care, housing and transportation.

The SBAC was again honored as the recipient of the SBA Partnership and Collaboration Award for our work with Cincinnati Childrens Hospital and the Therapeutic Division of CRC to provide adapted aquatics and strength training to individuals with SB. Last year, SBAC received this same award for the national Young Adult and Adolescent Tele-program.

Be sure to make attending next year's conference a priority. Says first time attendee Nicole Lewis, "The conference was a wonderful experience. The networking and educational opportunities are like none other. I can't wait for next year!