 Launch event with the New York Giants
On October 8, 2006, the Bone and Joint Decade's National Action Week was launched at a game of the New York Giants vs. the Washington Redskins. The event was organized by the NY Giants and the International FOP Association to especially raise awareness of Fibrodysplasia Ossificans Progressiva (FOP).
Thanks to the team, attendees of the New York Giants-Washington Redskins game at Giants Stadium in East Rutherford, NJ viewed a special 90-second video on FOP during select timeouts. The video helped "kick off" National Action week, which runs from October 12 to 20.
Several families affected by FOP from New Jersey, New York and Connecticut, along with friends, gathered at the Giants Stadium for the October 8 game. Organized by the NY Giants, they were invited to observe the Giants - Redskins practice, as well as to participate in the pre- and post-game festivities. "It was an experience that I will never forget. Thank you so much for an unforgettable day," said FOP patient, Laura Rossano to FOP advocate Gary Whyte who worked with the NY Giants to organize the day.
"It was a beautiful sight to see Sophia's face light-up after having her face painted with the Giants blue and white colors," said parent Connie Green.
Positioned on the sidelines during the practice, FOP patient Laura Rossano, 17, bright and bubbling with enthusiasm in her Giants jersey was approached by one of the Redskins coaching staff who gave her a football from the team. Jay Feely of the New York Giants and a referee then went over to her with an NFL pin. Chad Morton of the New York Giants presented FOP patient Daniel Licht, 12, with a football.
Anannouncement at the beginning of the game directed the 75,000 people attending the game to the big stadium screens to watch a 90-second video about FOP. After the game (NY Giants 19, Washington Redskins 3) the gathering went back to the bubble for post-game activities and a lot of autographs.
 "You have some idea of how much fun these kids had, but you have only an inkling of how much it will mean when they are in pain and they can bank on the memory of that day which will bring a smile to their lips, years later, decades even," reported parent Jeri Lidht.
"The day was amazing for several reasons. Not only did it create awareness of FOP to an audience of 75,000 people, but perhaps even more importantly, it allowed families in the FOP community to gather together and have fun together, something that unfortunately does not happen very often," added patient Holly Pullano. The same feeling was clear for Zachary Kane who told his mother, "Mom, I had a really good day today. I always feel like I am the only one with FOP and now I have finally met others with it."
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Choices and Outcome of Joint Replacements - A Public Symposium
Along with the growth in the numbers of people over the age of 60, extended lifespans, and more active lives, has come a parallel increase in the incidence of osteoarthritis. As a result, the curves in the number of individuals receiving joint replacements continue to rise, particularly for knee replacement. Not surprisingly, there have been significant technological advances in all aspects of joint replacements in the past decade, to the point where even the experts find it difficult to predict what advantages will be translated to the patient. After all, it can take many years of clinical research to test the outcomes. Nevertheless, several manufacturers are using Direct-to-Consumer advertising, while hospitals and individual doctors are using the Internet, to persuade prospective patients of the advantages of their products, methods or services. With the idea of trying to see this complex situation through the eyes of prospective total joint patients, Chitranjan S. Ranawat, MD, Chief of Orthopaedics at Lenox Hill Hospital, and Peter S. Walker, PhD, Director of the Laboratory for Minimally-Invasive Surgery at NYU-Hospital for Joint Diseases held a Public Symposium in New York on October 9, 2006. The Arthritis Foundation and the Bone and Joint Decade cooperated in publicizing the meeting, which resulted in attendance by over 60 people, together with surgeons and researchers who had been attending an orthopaedic conference immediately prior. There were three sessions, Choices in Total Joint Design, Surgical Technique and Pain Management, and Effectiveness of Rehabilitation, each session having three speakers and a Chairman. These individuals were internationally recognized experts from all around the USA, with our own hospitals in New York well represented. The audience had never had such an experience at hearing first hand of the state of the art of the field and the complexities involved. They learned that things are not black and white but that many newer technologies are still under investigation. When is a uni knee or a rotating platform preferable to a standard fixed-bearing design? Is a cemented hip better than an uncemented, or are the new surface replacements the best choice? Are hard bearings such as ceramic-on-ceramic and metal-on-metal better than metal-on-polyethylene? Should the patient insist upon a minimally-invasive procedure, and will this enable them to go home the next day? How much effort should they expend in a rehab program after their total knee and will it produce a quicker recovery? From the viewpoint of the panelists, they had never been confronted directly by a large group of prospective patients, all asking them the leading questions that they themselves are concerned with. The Symposium probably gave everybody a much better perspective. In spite of the wide range of options available today, everybody's case is individual and no two treatments and outcomes will be exactly the same. The success of the Symposium may well encourage others to set up similar events which may result in a better understanding between the patient and the physician.
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 Cup Cakes Galore
Some 200 staff of the American Academy of Orthopaedic Surgeons and specialty societies with offices in the AAOS building located in Rosemont, Illinois, as well as staff at the nearby offices of the American College of Foot and Ankle Surgeons, were invited to celebrate National Action Week and learn more about the Decade, on Thursday, October 12.
 Dubbed 'Cup Cake Day' everyone received a cup cake sporting a card about National Action Week, and items about the Decade, including a copy of the Presidential Proclamation that established the National Bone and Joint Decade.
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Wickenburg Celebrates with Brown Bag Session
 Citizens of Wickenburg in Arizona were invited to a brown bag session on bone and joint health October 12.
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Centers for Disease Control and Prevention Updates Arthritis Prevalence Figures
Timed to coincide with Bone and Joint National Action Week, the U.S. Centers for Disease Control and Prevention (CDC) issued an update on the prevalence of doctor-diagnosed arthritis and arthritis-attributable activity limitation in the October 13 edition of the Morbidity and Mortality Weekly Report (MMWR). National Action Week was announced on the cover page of MMWR next to the arthritis prevalence update.
Arthritis is highly prevalent among U.S. adults and is expected to affect approximately 67 million adults by 2030. This report updates estimates of the prevalence of doctor-diagnosed arthritis and arthritis-attributable activity limitation in the adult U.S. population. The findings indicate that during 2003--2005, approximately 46.4 million persons had doctor-diagnosed arthritis (1 in 5 people) and 17.4 million had arthritis-attributable activity limitations, making it one of the most chronic conditions and underscoring the need to increase availability of evidence-based arthritis prevention and management interventions.
Over 38%, or 17 million, adults are limited in their activities because of their arthritis. Women, older adults and racial/ethnic minorities are disproportionately affected. Increasing physical activity, losing excess weight, and participating in self-management education classes have been shown to reduce pain, improve functional limitations and mental health, and reduce disability among persons with arthritis. Increasing the availability of these evidence-based interventions in the community should be a critical public health goal.
Click here to read the full report.
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Multidisciplinary Prosthetics Conference
University of Kansas Medical Center
October 13, 2006 - There are approximately 350,000 amputees in the United States, with the number projected to continue to rise due to trauma, including armed conflict, and complications of diabetes. The appropriate care of amputees requires communication between orthopaedic surgeons, physiatrists, prosthetists, and physical and occupational therapists. This is the type of multidisciplinary approach to musculoskeletal care that lies at the core of the Decade. In an effort to enhance this dialogue, as well as to discuss basic and emerging technologies regarding amputation and amputee care, the Departments of Orthopaedic Surgery, led by Kim Templeton, MD, Physical Medicine and Rehabilitation, led by the Chair of the department, George Varghese, MD, and Prosthetics represented by Matt Luetke, CPO, organized a conference at the University of Kansas Medical Center on October 13, 2006, in recognition of the Bone and Joint Decade.s National Action Week. The conference was attended by members of the departments of orthopaedic surgery and physical medicine and rehabilitation, as well as prosthetics and physical therapy.
The conference was opened by Dr. Templeton who discussed the goals of the Decade and the recent United Nations treaty to improve the rights of people with disabilities. Invited speakers included Michael Pinzur, MD, Professor of Orthopaedic Surgery and Rehabilitation at Loyola University Medical Center, Chicago; Heikki Uustal, MD, Medical Director, Prosthetics and Orthotics, JFK Johnson Rehabiliation Institute, Edison, New Jersey; and Jack Uellendahl, CPO, Hanger Orthotics and Prosthetics. Dr. Pinzur spoke on the surgical considerations in upper and lower extremity amputations, emphasizing that the most common cause of a poorly functioning stump is surgical technique.
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No Age Restrictions - Children At Risk
 Christopher
Just a few months after being diagnosed with juvenile rheumatoid arthritis (JRA) Christopher Herbs, 13, was able to return to the hockey rink.
Christopher, of Rexford, N.Y., is fortunate. His parents sought medical attention after they noticed that he looked uncomfortable while walking and had trouble putting on his hockey skates. While they originally attributed the problem to "growing pains," they checked with a pediatrician, who said the boy should see a pediatric rheumatologist.
There were no pediatric rheumatologists nearby, but Christopher's mother, Lauren, had heard of a specialist at Shriners Hospitals for Children in Springfield, Mass. - more than an hour away. There, Deborah Rothman, M.D., Ph.D., a pediatric rheumatologist who serves on the council board of the American Juvenile Arthritis Organization, was able to see the boy quickly and make the diagnosis of JRA.
Today, more than two years later, "Christopher can do whatever he wants," said his father, Tim Herbs.
 Abby
Abby, 11, of Hometown, Ill., has received treatment for JRA at the Chicago Shriners Hospital since 2003. When her pediatrician suspected JRA, he told Abby's mother that Shriners Hospital "was the place to go." Abby was seen within two days.
Abby's JRA may have been missed for years because she is non-verbal and couldn't articulate her discomfort. Gradually, she seemed to have increased stiffness and less range of motion, explained Barbara, her mother. As soon as Abby was diagnosed and received proper medication, her stiffness began to lessen.
"I wasn't even remotely aware of JRA, or what signs to watch for," said Barbara.
Today, the family tries to complement Abby's physical and occupational therapy with activities that are fun, like swimming or horseback riding.
 Shaniqua
Shaniqua, 12, of Portland, Ore., is also fortunate. She's receiving appropriate treatments under the supervision of a pediatric rheumatologist at Shriners Hospitals for Children - Portland. Participation in therapeutic activities at the Portland hospital, including art and aquatics, has improved Shaniqua's range of motion and stamina. In addition, with the help of counselors at the hospital, Shaniqua is learning how to "live with the discomfort, not dwell on it, and have a good life," said her mother, Andrea.
Raising awareness
During U.S. Bone and Joint Decade's National Action Week (Oct. 12-20), Shriners Hospitals for Children will work to raise awareness of JRA, especially in terms of symptoms, available treatments and the need for more pediatric rheumatologists.
Shriners Hospitals for Children was the first hospital network to publicly support the U.S. effort, which has the support of around 100 health care organizations, all 50 states, the federal government and all 125 U.S. medical schools. Many organizations involved, such as the Pediatric Orthopaedic Surgeons of North America, the American Academy of Pediatrics and the Arthritis Foundation place an emphasis on pediatrics.
Understanding JRA
There are three main types of JRA: pauciarticular JRA, which involves fewer than five joints, polyarticular JRA, with at least five active joints, and systemic-onset JRA, which is associated with high fevers and a characteristic rash in addition to arthritis. The average age of onset for pauciarticular JRA, the most common form, is between 1 and 3 years of age.
Children with JRA often experience stiffness in the morning or after periods of inactivity, and may walk with a limp that improves throughout the day. The affected joints may be swollen and warm.
Pediatric rheumatologists have the expertise and education needed to diagnose and care for children with JRA and other rheumatic diseases. However, nearly half of all U.S. medical schools do not have a pediatric rheumatologist on their faculties, and there are only about 215 board certified pediatric rheumatologists in the country. This often makes it difficult for children with JRA to quickly obtain the level of care needed for early diagnosis and treatment.
Shriners Hospitals can help
For more than 80 years, Shriners Hospitals for Children has been a leader in efforts to understand, prevent and treat musculoskeletal problems associated with pediatric orthopaedic conditions and injuries. Most of the 19 Shriners Hospitals for Children that treat orthopaedic problems provide care for children who have JRA. Sometimes there is a pediatric rheumatologist on staff; in other cases, specialists see patients at the hospitals as needed or during regularly scheduled clinics.
Shriners Hospitals provide medical care, physical and occupational therapy, joint injections and surgery if needed to correct leg-length inequalities or replace joints. All of the hospitals also have child life therapists who provide emotional support to both children and families. Shriners Hospitals provide all care at no charge.
"Shriners Hospitals for Children is dedicated to helping children with musculoskeletal diseases, and JRA is one of the most serious of those conditions," said Donald Lighter, M.D., associate director of medical affairs for Shriners Hospitals. "Staff at our hospitals see many children with JRA, who need a number of services and the expertise of our pediatric orthopaedists, rheumatologists, orthotists and prosthetists, as well as many support services like physical and occupational therapy. Shriners Hospitals for Children is committed to ensuring that these children receive the best comprehensive care available to reduce the effect of the disease on their lives."
Shriners Hospitals for Children is committed to excellence in patient care, research and teaching. An international system of 22 hospitals in the U.S., Canada and Mexico, Shriners Hospitals provides expert, family-centered care at no charge. Children up to the age of 18 are eligible for treatment of orthopaedic problems, burns, spinal cord injuries, and cleft lip and palate, regardless of financial need or relationship to a Shriner. For more information about Shriners Hospitals, visit www.shrinershospitals.org. For additional information on JRA, also visit www.arthritisfoundation.org.
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Back in the Groove TM
Saturday, October 14, Zimmer Orthopaedic hosted a health fair in Philadelphia as part of the new "Back In the Groove" educational campaign. The goal of the campaign is to educate arthritis pain sufferers and their care givers about joint replacement treatment. The audience attracted people of all ethnic backgrounds. The goal of the health fair was to provide information so that participants are better equipped to make good choices about their healthcare.
Attendees were invited at no cost. They had the opportunity to receive X-rays and a consultation from orthopaedic surgeons about their arthritis pain; attendees also listened to a panel discussion of orthopaedic experts and watched demonstrations on flexibility and mobility from joint replacement patients. Panelists included Dr. Charles Nelson of the University of Pennsylvania Presbyterian Medical Center and Dr. John T. Williams, Jr. of the Albert Einstein Medical Center, will discuss arthritis pain treatment and joint replacement options and take questions from the audience
The event was held at the Saint Charles Senior Community Center on Christian Street in South Philadelphia. It was well attended by about 150 people who enjoyed a warm breakfast and a chance to talk to a number of local personalities. There was a panel discussion in which a husband and wife team offered testimonials to the efficacy of their joint replacements. Dr. Mendy Meller representing the Bone and Joint Decade described its mission and goals. In his remarks he highlighted the needs of those in the context of a minority musculoskeletal health initiative. Patients were given the opportunity to be heard and to share their experiences both with regard to their difficulties as well as the responses they received from their health care providers. A number of stations were made available where screening x-rays, bone density studies, diabetic screening and blood pressure checks were done. Issues with regards to patient expectation, access to care and being heard by health care providers were recurring issues.
"There seemed to be a great deal of satisfaction by all who attended," reported Dr. Meller. "The program was very well received. Of course the fact that it happened to coincide with Governor Rendell's designation of Bone and Joint Action Week in Pennsylvania didn't hurt. It was actually very helpful for the local residents of South Philly to realize that there was a national initiative to encourage musculoskeletal health and preventive and elective care. This is in general a population that tends to believe that pain limitations and infirmities are a mandatory part of the aging process."
Back in the Grove partners include the NAACP, Philadelphia Urban League, United Negro College Fund, National Bar Association, The National Association of Colored Women's Clubs, Inc., 100 Black Men of Philadelphia, Alpha Kappa Alpha Sorority, Inc., Kappa Alpha Psi Fraternity, Inc., National Black MBA Association, and the National Association of Black Accountants.
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World's Largest Dinner Party
 Families and friends across the U.S. and around the globe gathered to partake in the World's Largest Dinner Party, officially held Saturday, October 14, although some held their parties on other days. Conceived by Hillary Weldon and Marsha Meyer to raise awareness of FOP (fibrodysplasia ossificans progressiva) and as a friend-raiser of funds for research and a symposium on FOP to be held in 2007, it is hoped this activity will grow year-by-year. Twenty five families and groups from the West Coast to the East Coast of the U.S., in England and Germany, came together for an evening to learn a little about FOP, while having fun. Dinner parties were hosted as formal and informal, and themes included Halloween, ice cream, pizza, and one was organized as a barn party.
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Straighten Up America! US National Launch
Monday, October 16, World Spine Day was celebrated with the national launch of Straighten Up America! Twenty-nine 4th and 5th graders of the Stoddert Elementary School in Washington, DC received an introduction to the program.
Present for the occasion was Ron Kirk of Life University who introduced the program, Armin Kuder of the Bone and Joint Decade's International Steering Committee, Melissa Johnson, Executive Director of the President's Council on Physical Fitness and Sports, Jacqueline Burroughs the U.S. Department of Health and Human Services, Beth Scott, a ten-time gold medalist Para-Olympic swimmer from Champions in Life, Anthony Rankin, MD, Second Vice-President of the American Academy of Orthopaedic Surgeons, Kimberly Templeton, MD, Kansas University Medical Center, who worked with Ron Kirk to develop the program, Kevin Corcoran, Executive Director, and Nataliya Schetchkova, PhD, Director of Research Publications, American Chiropractic Association, and Toby King, Executive Director, U.S. Bone and Joint Decade.
 Armin Kuder told the students about the importance of the Bone and Joint Decade and what is happening around the world, Toby King spoke about the need for the Decade in the U.S.. Jacqueline Burroughs encouraged the students to make exercise a daily habit and Melissa Johnson highlighted the importance of weight-bearing exercise to strengthen bones and maintaining a good posture. Dr. Templeton explained the basics of bone structure to the students and how to maintain healthy bones and joints. Beth Scott challenged the students to believe in achieving their dream. Much to their delight she also brought her Olympic Gold Medal with her and invited the students to handle it. Ron Kirk then took everyone through Straighten Up America! He then called on two of the students to lead the program, and invited all of them to teach their parents.
Additional folks who attended were Dr. Andriana Kalapothakos, Stoddert principal; launch logistics coordinator and school nurse, Brenda Ngwa; Physical Education specialist, Jonathon Colton; David O'Bryon, Executive Vice President of the Association of Chiropractic Colleges; Christine Spain, Director of Research Planning and Special Projects of the President's Council on Physical Fitness and Sports; Bill Sandmeyer, Director of the House Representative's Wellness Center; Bob Pohtos, Executive Vice President of the International Chiropractor's Association; Dr. Thom Connelly, District of Columbia Chiropractic Association: Dr. Stepehen Simonetti, President of the Congress of State Chiropractic Associations.
 "All-in-all, the national launch was a great success," reported Dr. Kirk, "Everyone involved had a wonderful time learning about and practicing positive habits for spinal health."
Around the U.S. and the world similar events took place.
(Photo right - Armin Kuder of the BJD International Steering Committee)
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Throughout National Action Week, the National Osteoporosis Foundation (NOF) planned and prepared for World Osteoporosis Day on October 20
World Osteoporosis Day is an opportunity for organizations around the world to educate individuals about osteoporosis and encourage people to take action to protect their bone health. The focus this year was on the role of food and nutrition in building and maintaining strong bones. To celebrate the day, the National Osteoporosis Foundation (NOF) developed a World Osteoporosis Day webpage with the most up-to-date information on calcium and vitamin D, tools for tracking and improving bone health, and calcium-rich recipes for people to prepare in support of the day. Additionally, Bess Dawson-Hughes, MD, NOF Board of Trustees member, issued a report on behalf of the International Osteoporosis Foundation, of which NOF is a member, detailing the critical role of nutrition in maintaining bone health and rehabilitating people with osteoporosis. An email was sent to thousands of NOF members and supporters encouraging them to visit the new webpage and participate in celebrating World Osteoporosis Day. For additional details, visit: http://www.nof.org/eventsandprograms/WOD/index.htm
Athletic Trainers and National Action Week
 The National Athletic Trainers' Association is calling on all athletic trainers to organize special activities to raise awareness of bone and joint health during National Action Week. The call is issued on the home page of its web site (www.nata.org), and in the monthly enewsletter which goes to 25,000 athletic trainers.
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State Resolutions
 State resolutions and declarations by governors calling on citizens to become more aware of bone and joint health during National Action Week 2006 and to organize activities to promote prevention education have been issued by Connecticut, Illinois, Indiana, Maine, Michigan, New Hampshire and Pennsylvania. (Photo: New Hampshire Governor John Lynch)
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