About Awareness Month

Introduction:

The National Scoliosis Awareness Month unites scoliosis patients, families, physicians, clinicians, institutions and related businesses in a collaborative partnership to create a positive public awareness, education, and advocacy campaign through a grassroots network of local activities, events and media impressions throughout the year.

The genesis of this program began in 2008 when the National Scoliosis Foundation (NSF) secured the first official U.S. House of Representatives Proclamation from Congresswoman Allyson Schwartz, PA, declaring June as National Scoliosis Awareness Month. The proclamation highlighted the facts about scoliosis and invited our government officials, and the entire community to join us in raising awareness about important issues regarding four major topics;

Patient Care, Patient Screening, Patient Privacy, and Patient Protection.

We launched the program in Philadelphia at a press conference with Congresswoman Schwartz, Mayor Nutter, patients, and families. And we concluded this first campaign at a similar event at the Massachusetts State House in Boston. In between these events, we published several press releases and held various activities in schools, hospitals etc to promote the campaign and engage other community members from around the country to do the same. We received feedback and noted several news articles documenting participation from hospitals, clinics, schools, and private practices in several states.

In addition to local participation, we also received supporting endorsements from the Scoliosis Research Society (SRS), the International Research Society for Spinal Deformity (IRSSD) and the Society on Scoliosis Orthopedic and Rehabilitative Treatment (SOSORT). Based upon the successes of our initial pilot project, we continued to develop the National Scoliosis Awareness Month program with new resources funded through various grants, and further ways to promote a positive message.

We are excited to officially partner with the Scoliosis Research Society this year to promote and grow the 2009 National Scoliosis Awareness Campaign into an annual program.

Scoliosis Overview:

Scoliosis is an abnormal curvature of the spine that affects two to three percent of the population, or an estimated 7 million people in the United States. Most are diagnosed with scoliosis between the ages of 10 and 15, but the condition also affects infants and adults. It is a condition that affects people of all races, classes and both genders. Girls are eight times more likely than boys to have a curve that will progress to a magnitude that requires treatment. Scoliosis is common in children with a variety of congenital and neuromuscular diseases, but it is most prevalent in seemingly healthy children, with no known cause (idiopathic).

Most curvatures are minor and require only that patients are monitored by their doctors. However, approximately one out of every six children diagnosed with scoliosis will have a curve that progresses to a degree that requires active treatment. In 2004, an estimated one million patients diagnosed with scoliosis utilized health care resources. The estimated total hospital charges, excluding professional fees and non-covered charges, for all patients released from the hospital with an idiopathic scoliosis diagnosis was $2.7 billion.

Scoliosis can get worse and may cause chronic back pain; impact heart and lung function, and take a toll on self-esteem. Screening for the condition is non-invasive and takes about 30 seconds. With early detection and proper treatment, people diagnosed with scoliosis can lead healthy, active lives. Fewer than half of the states in our nation currently require screening for scoliosis at schools, so it is imperative that parents, teachers, coaches, healthcare professionals and children are aware of the early signs of scoliosis. Additionally, advances in science and technology mean both the diagnosis and treatment of scoliosis are improving every year.

Patients and physicians working together can help raise scoliosis awareness and promote a positive message through the news media and community events. By working in a united front the scoliosis community can help maintain a proper perspective and offset some of the misunderstanding and negative views often portrayed in the media. Key information can provide patients, parents and their children with a better understanding of the signs and symptoms of scoliosis and where to get help. This in turn can help the healthcare system to be more effective and less costly. And last, but not least, community and grassroots events, such as health seminars and support groups, can encourage the sharing of personal stories and connect patients so that no family affected by scoliosis goes through the experience alone.

Program Objectives:

1. Create a positive public awareness, education and advocacy campaign through a network of local activities, and media events throughout the year

2. Unite scoliosis patients, families, physicians, and clinicians in a collaborative partnership and common cause yet allow individual preferences and activities.

3. Increase public awareness of scoliosis and related spinal deformities

4. Advocate for Prevention through increased early detection and treatment

5. Educate, Encourage, and Empower underserved scoliosis patients and families.

6. Minimize patient anxiety, reduce unnecessary medical costs, and facilitate better healthcare decisions in line with available treatment options and personal choice.

7. Enhance Patient Goodwill through a patient centered campaign

8. Develop a grassroots contact/relationship with local and State representatives.

9. Promote a positive media message and perspective on Patient/Physician Relationships

10. Build a network of collaborations and alliances to help sustain and grow the program.

Program Goals:

The top three goals or expected outcomes of the 2009 National Scoliosis Awareness Month program are;

1. Hold at least one National Scoliosis Awareness Month press conference or recognition event in each State.

2. Generate at least one local media coverage story in each state.

3. Name at least one Angel Brigade College or High School Scoliosis Ambassador in each State.

Program Activities:

  • Publish the June 2009 National Scoliosis Awareness Month Proclamation along with consensus talking points around the topics of Patient Care, Patient Screening, Patient Privacy, and Patient Protection.
  • Implement a PR program to disseminate the Proclamation and awareness campaign through digital and conventional media.
  • Promote and elicit participation from physicians, patients, and other healthcare providers through website, newsletters, and presentations.
  • Publish and distribute the Scoliosis Media & Community Guide to provide as a resource to help various constituents promote the message and tell their story.
  • Distribute the new School Screening Student Video and coordinate a volunteer program to conduct prescreening classes. Engage the student community through a poster/writing project.
  • Promote & Help Coordinate State Capitol National Scoliosis Awareness Day Press Conferences/Events.
  • Design and implement a new website section to facilitate, encourage, and evidence the extent and impact of the program.
  • Expand the Angel Brigade Network– Establish nomination process and training mechanism for College & High School Spokespersons to act as the Local Team Leaders and Online Patient Community Network Coordinators providing Peer to Peer Support and facilitating Health Education Seminars. Structure Pay it Forward ~ Community Outreach Program for Local Group with emphasis on becoming the primary School Screening Ambassadors.

 

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