Left to right: Robert Haralson, III, MD, Joshua Jacobs, MD, Jerrilyn Cambron, DC, MPH, Ryan Mizner, PT, PhD, Nancy Lane, MD, G. Russell Huffman, MD, MPH, Stephen Katz, MD, PhD, Francis Shen, MD, Kurt Spindler, MD, Dina Jones, PhD, PT, Kevin Bozic, MD, MBA, Zaifeng Fan, PhD, Harry Hoyen, MD, Elizabeth Myers, PhD, Emil Schemitsch, MD, John Esdaile, MD, Todd Milbrandt, MD, MS, Janet Yu-Yahiro, PhD, Kornelis Poelstra, MD, PhD, Edward Puzas, PhD, Allen Lehman, MA, PhD, Terese Chmielewski, PT, PhD, Toby King, Antonio Avina-Zubieta, MD, MSc, Esi DeWitt, MD, Chad Cook, PT, PhD, MBA

Sixteen young clinical investigators and seven experienced researchers met May 13-15 in Rosemont, Illinois, for the first workshop of the United States and Canadian Bone and Joint Decade's young clinical investigators initiative.

The seven experienced researchers making up faculty for the program included Nancy Lane, MD, chair of the initiative, John Esdaile, MD, Joshua Jacobs, MD, Elizabeth Myers, PhD, Edward Puzas, PhD, Emil Schemitsch, MD, and Kurt Spindler, MD. Hans Kruder, MD, will join the faculty in November.

Stephen Katz, MD, director, National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) participated in the workshop, meeting with the young investigators during the afternoon. At dinner later he outlined to the investigators how rewarding a career in research can be and some of the hurdles to overcome to become a successful researcher.

The program has been developed because too few young clinical investigators are entering the field of clinical investigation in the musculoskeletal diseases. One of the major hurdles to a young clinical investigator's success is sufficient mentoring in how to write and secure a grant in clinical research. The workshop focused on grant writing skills in order to build a successful research proposal to NIH standards.

Kevin Bozic, MD, MBA, one of the young investigators sent the USBJD the following message after the workshop. I wanted to thank you for including me in an outstanding seminar this past weekend in Chicago. Although I have attended similar workshops in the past, the quality of the faculty, the lectures, and the interaction amongst the faculty and the participants was unsurpassed. I want to applaud you both for coming up with the idea, and for working hard to make this program a reality. As a young investigator who aspires to become an independently funded health services researcher, I couldn't ask for better training.

Participants will now fully develop and submit their research proposals, aided by faculty working with them as mentors. The second workshop, which will focus on a review of the summary statements following submission of their full proposals, as well as discussion on how they will respond and adjust proposals, will also include a mock study section. The workshop will be held November 4-6, in Toronto, Canada, and be hosted by the Canadian Bone and Joint Decade. Mentors will continue to work with the young investigators until they are funded.

The program covers clinical research training and permits collaborative interactions with talented clinical investigators in other organizations involved in musculoskeletal care. These interactions enhance the credibility and visibility of musculoskeletal outcomes research and benefit to our society.

Support for the program has been provided by a number of participating organizations, including the American Academy of Orthopaedic Surgeons which hosted the first workshop, the AAOS Council on Research and Scientific Affairs, AAOS Council on Academic Affairs, American College of Rheumatology, Journal of Bone and Joint Surgery, Orthopaedic Research and Education Foundation, Orthopaedic Research Society, Biomet, and Zimmer.

Capitol Hill reception focuses on FOP

The Decade teamed up with participating organization the International FOP Association (IFOPA) July 13 to hold a reception on Capitol Hill to promote more research into fibrodysplasia ossificans progresiva (FOP), the musculoskeletal condition where, after birth and progressively through life, muscle is transformed into bone, creating a second 'skeleton' of extra bone, rendering movement impossible. The session was sponsored by Senators Frank Lautenberg (D-NJ), Sen. Rick Santorum (R-PA), and congressional leaders Rep. Michael Ferguson (R-NJ) and Rep. Robert Andrews (D-NJ).

Photo: USBJD and IFOPA representatives, patients and their families, and U.S. Marshall George Walsh gather for a group photograph at the reception.

The reception, held in the ornate Lyndon B. Johnson Room, right outside the Senate chamber, provided an example of what an impact a relatively small group can make. Five senators who attended the reception spoke about FOP and what needs to be done, and pledged their support for efforts to increase research funding. FOP affects about 500 people worldwide, and about 230 in the U.S., but no cure has been found. Expectations are that research into a cure will also deliver indications about other musculoskeletal conditions. At present fully 85% of research is funded by affected families.

Sen. Frank Lautenberg (D-NJ), Sen. Rick Santorum (R-PA), Sen. Jon Corzine (D-NJ), Sen. Lincoln Chafee (R-RI), Sen. Craig Thomas (R-WY), and Sen. John McCain (R-AZ) attended the reception. Sen. Hillary Clinton (D-NY) passed by to receive a briefing kit and discuss efforts. Later that evening Hillary Weldon and dinner guests had a chance meeting with Sen. Olympia Snowe (R-ME), Sen. Lindsey Graham (R-SC) and Sen. Paul Sarbanes (D-MD).

Photo: (left to right) Garry Whyte, George Suflakis, Dr. Peter Armstrong, Sen. Jon Corzine (D-NJ), Amanda Cali, Dr. David Glaser, Dr. David Spiegel, Carol Higgins Clark, Dr. Eileen Shore, U.S. Marshall George Walsh, and Hillary Weldon.

USBJD Board Member Dr. Peter Armstrong of Shriners Hospitals for Children opened the reception with a presentation on the Decade, the current and escalating burden of musculoskeletal disease, and the need for increased awareness, education and research, most espeically for childhood conditions, and FOP. Dr. David Glaser of the University of Pennsylvania FOP Research Laboratory presented background about FOP, research efforts, and the possibilities for a breakthrough.

Photo: Carol Higgins Clark and Sen. Rick Santorum (R-PA) show off their green FOP bracelets.

Amanda Cali, whose son Ian has FOP, discussed being a parent, and the effort being made to find a cure through research. Holly Pullano explained what life is like as an FOP patient.

Photo: Hilary Weldon and Sen. Frank Lautenberg (D-NJ)

U.S. Marshall George Walsh gave an inspiring talk about continuing the fight for a cure. Special guest Carol Higgins Clark, the noted author, spoke about the importance of research so that the end of FOP can be found soon.

Photo: Sen. John McCain at the reception.

Eight patients and their families attended the event and helped senators learn more about FOP, and what they can do to help raise awareness and increased research funding.

Photo: Sen. Rick Santorum (R-PA), Sen. Craig Thomas (R-WY) and the mothers of FOP patients

Photos courtesy, Todd Kaplan (ToddKaplan@aol.com/908-803-3333)

Annual/Board meeting 2005

Tuesday, June 7, the Board met in Tampa for its annual in person face-to-face meeting. Elections to the Board and for President were an important part of the meeting, and well as reports and discussion of programs and activities, and plans for the coming year. Nancy Lane, MD was elected President for the period 2005-2007. We thank Shriners Hospitals for Children for hosting the meeting.The main items discussed and their outcomes were as follows.

Treasurer's Report: Michael Condit, MD, Treasurer, presented his report on the audited statements for 2004, on the period January-April 2005, and provided a preliminary report on the results to end May 2005. The USBJD is financially sound, with revenues covering expenses and with most expenses directed to cover specific program expenses. The Board recognised that attention must be paid to continued program funding and to ensuring renewal and new revenue sources to cover general operating expenses.
Elections: Because of the quantity, breadth and quality of submisssions, the nominations committee felt it necessary for the Board to review and discuss the nominations. Following this discussion a vote by ballot was taken. Elected Cynthia Howe, BSN, RN, ONC, Kenneth Koval, MD, and Kimberly Templeton, MD were elected as memebrs-at-large representing participating organizations. Kent Greenawalt and Hilary Weldon were Elected Member-at-Large representatives of patients and the general public elected as representatives of patients and the general public. As noted above Nancy Lane, MD, was elected President, Kimberly Templeton, MD Treasurer, and Edward Puzas, PhD was re-elected Secretary. Regis O'Keefe, MD, PhD, now becomes Past-President. We congratulate the new Board members and officers! The Board thanked all nominees, and made a special request to those not elected to become involved in committees and task forces.
Advocacy: The Capitol Hill meeting on Childhood Conditions focusing on FOP, to take place Wednesday, July 13, 2005 was discussed. This meeting is being organized by participating organization IFOPA. The American Academy of Pediatrics, Pediatric Orthopaedic Society of North America, and Shriners Hospitals for Children indicated they would play an active part in this event. See separate post-event report above. For National Awareness Week in October, members were asked to assist in securing proclamations from their states for National Awareness Week.
Communications: A proposal for National Awareness Week, October 12-20, is currently being reviewed by the Communications Committee. Opportunities for the Decade's large display to be used as a semi-permanent exhibit, by hospitals, medical schools, at the offices and meetings of the larger USBJD participating organizations is to be explored.
Public Education: Chair, K. Templeton, MD, outlined initiatives underway to extend the Decade's reach beyond healthcare organizations, as well as plans to expand the Decade's high school education program "Protect Your Bones", and to launch the education program Bone Health + Osteoporosis in partnership with public libraries and health and fitness centers. K. Templeton asked participating organizations for more content input for the patient and general public section of the Decade web site.
Research:
- A symposium on "Treating Trauma in the Third World" is being organized by the American Bone and Joint Surgeons and Clinical Orthopaedics and Related Research. This will be held in India 2007. It is hoped that this will become a sustainable activity.
- Joshua Jacobs, Chair, AAOS Council on Research and Scientific Affairs, outlined plans for the renewal of Musculoskeletal Conditions in the United States, a publication which details statistics on the burden of disease, and which is used extensively in supporting grant applications, as well as having provided the basis for development of the Decade's Case Statement. The AAOS is inviting other organizations to support this effort. Several Board members spoke out about the importance of this publication and in support for the initiative. J. Jacobs requested members take the proposal to their organizations to assess the level of support. A copy of the proposal is available.
- Project 100: J. Bernstein, MD, reported that the draft form of the Association of American Medical Colleges' recommendations for medical schools on the level of knowledge graduating medical students should possess on musculoskeletal health is being edited and should be distributed to schools shortly. The Decade has been invited to participate in the AAMC regional meetings next November. The USBJD is waiting for a formal proposal from the National Board of Medical Examiners to provide support for development of a shelf test on musculoskeletal health. The NBME is developing the database of musculoskeletal questions, and two musculoskeletal surgeons have joined the NBME's Surgery Examination Committee. 93 medical schools have declared support for the Decade. 34 have not yet. The USBJD needs to work on the next steps to raising awareness of the Decade and musculoskeletal health in medical schools. Seven medical schools are beta testing the new Musculoskeletal Medicine textbook.
- Young Investigators: N. Lane, MD, Chair, reported on a very successful first workshop. See separate report. The strong interest in the program was noted, as well as the positive feedback received from participating young investigators attending the first workshop, which was also attended by Dr. Stephen Katz, Director, NIAMS.
- National Institutes of Health: A meeting with the National Institutes of Health is being planned for October 19, 2005. It is hoped all USBJD participating organizations can be invited. This will be the first time all have had an opportunity to meet together. Following developments with Project 100 and the Young Investigators program, both initiatives that resulted from the USBJD's first meeting with NIH, the agenda for the October meeting will be focused on the future and next steps the Decade needs to take. E. Puzas is forming a task force to develop plans for the meeting, and seeks input from all organizations on issues they feel should be addressed.
- Armin Kuder, a member of the International Steering Committee of the Bone and Joint Decade outlined current activities and priorities of the global BJD. He highlighted new collaborations around the world because of the Decade, and the relationship being built with the World Health Organization, as well as the increasing energy and dynamism of the annual meeting of National Action Networks. The 2005 meeting will be held in Ottawa, Canada, October 27-29, and its affiliated patient meeting, to be held October 25-26.
Special thanks were offered to Board members standing down this year: Boyd Bowden, DO, Vice-President, Michael Condit, MD, Treasurer, Kit Song, MD, Members-at-Large Andrea McConville, RN, and John Dormans, MD, and a presentation was made to Regis O'Keefe, MD, PhD, to thank him for his leadership as USBJD President over the past two years, noting especially how the Decade during this time has risen to a new level of activity.

People in the News

Nancy Lane, MD, USBJD President, 2005-2007

Nancy Lane, MD, was elected USBJD President, 2005-2007, at the Annual/Board meeting held June 7. Dr. Lane is director of the Center for Aging, vice chair for Research, Department of Medicine, and Professor of Medicine and Rheumatology at the University of California at Davis Medical Center. Dr. Lane earned her medical degree at the University of California at San Francisco and completed a fellowship in rheumatology at Palo Alto Veterans Administration Hospital in Palo Alto, California, and Stanford University Medical Center in Stanford, California. Dr. Lane just became a co-editor for Arthritis and Rheumatism.

Dr. Lane is an internationally known musculoskeletal researcher. She is currently a fully funded NIH researcher focusing on the epidemiology and genetics of osteoarthritis and reversal of postmenopausal and glucocortoid-induced osteoporosis with PTH treatment. She is on the editorial board of the Journal of Bone and Mineral Research, Osteoporosis International, and Arthritis Research, She is a consultant reviewer for numerous peer-reviewed journals, among them JAMA, Journal of Bone and Mineral Research, Annals of Internal Medicine, and Journal of Bone and Joint Surgery. Dr. Lane is a frequent lecturer on osteoporosis and the author of hundreds of journal articles, book chapters, books, and abstracts.

Kristin Glavin, JD, Executive Director, American Orthopaedic Association

Kristin Olds Glavin, JD, has become Executive Director for the American Orthopaedic Association (AOA). The AOA has nearly 1,000 active members, who have been nominated and voted into the prestigious society. The society is focused on a single theme of leadership which materializes in the form of leadership and governance training, confrontation of critical issues in orthopaedics, award presentations and traveling leadership fellowships. Glavin comes to the AOA from the American Academy of Orthopaedic Surgeons where she was Associate General Counsel/Director, Corporate Legal Affairs. She was instrumental in coordinating and directing many high-profile patient safety programs, including 'Sign Your Site' an initiative aimed at reducing wrong site surgery. Glavin has experience in research, strategic planning and finance. She holds a Bachelor of Science degree from Northwestern University and a Juris Doctor from Loyola University School of Law.

NIH - USBJD Meeting Planned, October 19

October 19, 2005, the USBJD and its participating organizations are invited to meet with the National Institutes of Health. Dr. Stephen Katz, Director, NIH National Institue for Arthritis and Musculoskeletal and Skin Diseases (NIAMS) has kindly invited the Decade and will be inviting his colleagues at other NIH institutes. Members of the USBJD Research Committee have been asked for input towards planning the agenda for this meeting. If you are not on the committee but would like to put forward a suggestion please email this to usbjd@usbjd.org. Participating organizations are invited to send one representative per organization. Every participant or the organization they represent must pay travel and accomodation expenses to attend the meeting. If some organizations do not wish to attend and there is space it may be possible to allow for more than one representative. The last USBJD NIH meeting was significant in providing direction to the Decade, leading to the development of Project 100, the musculoskeletal education program, and the Young Investigators Initiative. That meeting also led to recognition that the Decade must raise awareness of musculoskeletal conditions and every participating organization was challengened to take up this cause. At the upcoming October 19, 2005 meeting, the agenda will focus on the future direction for the Decade and identifying new programs, collaborations and initiatives.

In the coming weeks a notice will be sent out with more details, but you are invited to mark October 19, 2005, in your agenda, and to submit suggestions for the organizing committee. This event takes place during BJD National Awareness Week 2005.

Progress on Bone Health + Osteoporosis Program

Dr. Carmona meets with USBJD Public Education Committee Chair Dr. Kimberley Templeton, Bella Dingh-Zarr of the American Automobile Association, and Toby King, USBJD Executive Director, to discuss the Bone Health + Osteoporosis program.

The U.S. Bone and Joint Decade (USBJD) will launch a pilot bone health + osteoporosis education program in select U.S. communities during the fall of 2005, in partnership with the Public Libraries Association and the National Network of Libraries of Medicine. This program is in response to the Surgeon General's first-ever report in 2004 on bone health and osteoporosis. The program will be launched nationally following an evaluation of the pilot project.

Educational sessions will be conducted at community public libraries and health clubs/fitness centers in six or more U.S. communities. The one-hour program - aimed at the general public will focus on bone health, osteoporosis, how to avoid fragility fractures and provide consumers with the information resources they need to make informed decisions on bone health. For each session, a medical expert, a health information expert, and a patient will team up to present the program. The session will feature a PowerPoint presentation, collateral materials, discussion, question/ answer period and follow-up. The USBJD will distribute the Surgeon's General's brochure, What it Means to You, and posters as educational materials in this pilot program. Material will also include a sheet about resources available through the library where the session is being held. Dr. Richard Carmona, U.S. Surgeon General, has said he would like to attend one of the launch sessions. The USBJD is also working with the National Institutes of Health National Network of Libraries of Medicine in developing this program.

The program will target men and women who are in the mid-50s and 60s, and are highly susceptible to osteoporotic fractures or have experienced a break. The goal is to target these individuals before they have a fracture, so they can take necessary steps to prevent bone disease and make changes in their lives to alter the course of the condition.

The USBJD is launching this effort to generate awareness and understanding about these important issues and to help reduce the 1.5 million fractures that occur annually.

Specifically, they want session participants to:

Do a self-assessment of their bone health, and living environment to make sure it is safe from potential falls
Start a dialogue with their primary care physicians and/or healthcare providers about bone health and osteoporosis
Make lifestyle changes
Discuss these issues with family, friends and colleagues of all ages
Participate in an assessment of the program's effectiveness (i.e., in six months or a year)

Key Messages

· Osteoporosis and other bone diseases are debilitating and can cause pain, loss of mobility and independence, deformity and mortality (contributing to a poor quality of life)

· The disorder affects men and women of all races and ages (it doesn't just affect women)

· Education with a focus on prevention can help alter the course of the disease (it's not too late to make changes)

· Americans can have strong bones and live healthy, independent and productive lives (through better awareness and education)

Promotion

Adding to the normal channels used by libraries to publicize this kind of event to the local community, the USBJD will use an integrated marketing communications approach including media relations, marketing materials, website presence and collaborating with libraries and health clubs/fitness centers on promotions. USBJD-affiliated organizations will be invited to participate in the program. State health departments responsible for osteoporosis will be notified about activity taking place in their states.

Efforts include identifying patients, caregivers and celebrity spokespersons who either have osteoporosis, or know someone with the disease. The USBJD hopes to videotape the patients, caregivers and celebrities for the presentation. If you know of people who might like to participate, please email usbjd@usbjd.org. Participation can simply be agreeing to provide background or comments for the written materials and presentation, or for the not-so-reticent being videotaped, or even participating as a presenter.

Background on osteoporosis

Osteoporosis is the most prevalent bone condition among Americans with nearly one in two women, and one in four men, likely to suffer from it in their lifetime. Osteoporosis is debilitating, reducing a person's freedom of movement, and leads to high incidences of hip and spine fractures. Prevention education is essential to lowering the burden of disease.

The Surgeon General's report on bone health and osteoporosis, released October 2004, is the first-ever Surgeon General's Report on this topic. Surgeon General Reports identify the relevant scientific data, rigorously evaluate and summarize the evidence, and determine conclusions. The Report is a starting point for concentrated national action to understand, prevent, diagnose, and treat bone diseases. The risks associated with poor bone health are high. By 2020, half of all American citizens older than 50 will be at risk for fractures from osteoporosis and low bone mass if no immediate action is taken by individuals at risk, health care professionals, health systems, and policymakers. 10 million Americans over the age of 50 have osteoporosis, the most common bone disease. Another 34 million are at risk for developing osteoporosis. Each year, roughly 1.5 million people suffer a bone fracture related to osteoporosis. The costs are tremendous: Approximately 20 percent of senior citizens who suffer a hip fracture die within a year of fracture. Thirty years ago, doctors thought weak bones and osteoporosis were a natural part of aging, but today we know that we can do something about them. Research remains a critical component of our plans to prevent and reduce bone disease in America. But research alone cannot ensure that the appropriate actions are taken to prevent osteoporosis and other bone diseases. Americans need to learn that they are never too old or too young to improve their bone health. The Surgeon General is America's chief health educator. Surgeon General reports have always played a critical role in promoting good health and safety. In 1964, for example, the first Surgeon General's report on smoking announced medical research showing that smoking was a definite cause of lung cancer. At the time, this was ground-breaking information. And the Surgeon General's endorsement gave it significant credibility and public attention. That report led to many education programs to explain the risks of smoking.

The USBJD thanks Merck & Co. for supporting this program with an educational grant.

Childhood Condition Kit Released

The USBJD released a Condition Kit on Childhood Musculoskeletal Conditions July 13, 2005 on Capitol Hill. The kit provides a straightforward description of the extent and nature of musculoskeletal diseases affecting children, as well as describing aspects of prevention, and research directions. The kit is designed to be understood by the lay public. It is available in print, or downloadable at www.usbjd.org.

Bone and Joint Decade Infoletter

To view the latest Bone and Joint Decade Infoletter (No. 41) containing information on BJD activities worldwide, please visit http://www.boneandjointdecade.org/default.aspx?contId=472

Our Newsletter Sponsor

The Decade recognizes GELITA Health Initiative (GHI) for providing a financial contribution toward the production of this newsletter. The GHI aims to promote research on the use of collagen hydrolysate and its impact in supporting cartilage regeneration and joint health. The GHI was established by the GELITA GROUP, the leading worldwide manufacturer of collagen hydrolysate. For more information regarding research on the benefits of collagen hydrolysate for supporting cartilage regeneration and joint health, please visit www.gelita-health-initiative.com.

USBJD thanks Friends of the Decade and the following major corporate sponsors

View listings of all Friends of the Decade.

The USBJD especially thanks the following corporations for their support.