Are You Suprised ? s11

HONORARY DIRECTORS Laura B. Gowen, LHD Founder & President Emeritus Samuel L. Hayes, III, Schiff Professor of Investment Banking, Harvard Business School W. Nicholas Thorndike, Corporate Director and Trustee

OFFICERS AND DIRECTORS March 17, 2003 Chairman of the Board, Clerk W.Hugh M. Morton, Esq Retired Hill & Barlow, President, & CEO Elias Zerhouni, MD Joseph P. O’Brien, Vice President Director Patricia M. Gregory Chair-Communications Committee National Institutes of Health Treasurer Dennis J. Fusco, CPA, 9000 Rockville Pike Managing Director, BDO Seidman Bethesda, MD 20892 Assistant treasurer Paul J. Geary, C.P.A., Principal Chair-Finance Committee Susan H. Gladstone, Dear Dr. Zerhouni: Director of Development Concord Library Chair-Website Committee Eileen M. Ilberman I am writing to implore you for increased priority and funding of etiology Chair-Grants & Fundraising Committee Kenneth S. Love, V.P. research for scoliosis. Increasing our knowledge about the cause(s) of Quality & Regulatory Affairs Pharmasol, Inc. scoliosis can significantly improve the health care of millions of people, Chair-Executive Committee Mary Mahony, C.A.G.S. while reducing the personal, medical, and societal costs of this curving, Special Education Teacher, & Author Belmont, MA twisting spinal deformity. But we need help from you, the National Chair-Research & Medical Information Marlene Leatherbee, MFA Institutes of Health (NIH), and NIAMS to make this happen. Jeremiah V. O’Connor, Esq. Chair-Legal Committee Peter F. McAteer, Chief Learning Officer As seen in the following highlights, scoliosis is a troubling condition United Nations-DP Warren E. Norquist affecting many people and is among one of the more predominant forms Vice President-Retired, Polaroid Corp. Suzanne Reeves of health disparities in our society;

MEDICAL ADVISORY COMMITTEE Randal R. Betz, M.D. Temple University Health Sciences  Scoliosis affects 2-3% of the population, or an estimated 6 million Center, PA David S. Bradford, M.D. people in the United States, and there is no cure. University of California San Francisco Medical Center, CA  Scoliosis impacts infants, adolescents, and adults worldwide William P. Bunnell, M.D. Loma Linda University Medical without regard to race or socio-economic status. The primary age Center, CA John B. Emans, II, M.D. of onset for scoliosis is 10-15 years old, occurring equally between The Children’s Hospital, MA Robert W. Gaines, Jr., M.D. both genders. However, females are eight times more likely to University of Missouri Hospital, MO John E. Hall, M.D. progress to a curve magnitude that requires treatment. Retired, The Children’s Hospital, MA, John A. Herring, M.D.  Scoliosis can impact the quality of life with limited activity, pain, Texas Scottish Rite Hospital for Crippled Children, TX reduced respiratory function, or diminished self-esteem. Howard A. King, M.D. Intermount Orthopedics  The vast majority of people with this condition are not expected to Boise, ID Michael O. LaGrone, M.D. require treatment. The problem is we do not know who will get it, Amarillo, TX John E. Lonstein, M.D. why they get it, which will progress, or how far they will progress. Twin Cities Spine Center, MN Richard A. Marks, M.D., P.A. Each year scoliosis patients make more than 600,000 visits to North Dallas Scoliosis Ctr., TX Clyde L. Nash, Jr., M.D. private physician offices, and an estimated 30,000 children are put Metro-health Medical Center Frank F. Rand M.D. into a brace for scoliosis, while 38,000 patients undergo spinal NE Baptist Hospital Andrew T. Sheils, Jr., M.D. fusion surgery. Savannah, GA Vernon T. Tolo, M.D  Despite physicians trying to treat this spinal deformity for Children’s Hospital of LA, CA centuries, 85% of the cases are classified as idiopathic. Consequently, a scoliosis patient's life is exacerbated by many unknowns, and treatments therefore that are often ineffective, invasive, and costly. Scoliosis patients also have increased health risks due to frequent x-ray exposure.

5 Cabot Place Stoughton MA 02072 Tel: (781) 341-6333 Fax: (781) 341-8333 www.scoliosis.org

 Scoliosis is a multifactorial disorder, which requires multidisciplinary research.

Scoliosis has personally impacted my life, so I know all too well about the potential physical, emotional, and financial burdens of this condition. I am a 52-year-old male who has had four spinal fusions since 1966. I am fused from T4 to L5 and expect, at a minimum, to eventually require a fifth surgery to fuse to the sacrum. I have spent more than 300 days in the hospital; had another 7+ months of school or work absences, and my total medical costs are estimated to be in excess of $200,000. I am also one of nine family members with scoliosis over three generations, including three of my five children. Two of these children along with my brother have also been treated for scoliosis, spending a combined period of six years in various braces. Because of the lack of definitive knowledge about scoliosis the burden of trying to determine what the best course of action is for my children is as painful as my own personal suffering.

The American Academy of Orthopedics has deemed this the Decade of the Bone and Joint. With this program in mind, and especially for the sake of future generations of scoliosis patients, I urge that this important and common condition receive a higher priority for research into its cause. I respectfully request that you seek the necessary appropriations and funding allocations for etiology research of scoliosis. The National Scoliosis Foundation has directly served over 75,000 patients, and we are calling upon them to join us along with the Scoliosis Research Society in asking for NIH's support.

Thank you in advance for your help in this vital matter.

Sincerely, Cc: Stephen I. Katz, M.D., Ph.D. Director National Institute of Arthritis & Musculoskeletal & Skin Diseases (NIAMS) Joseph P. O'Brien National Institutes of Health President & Patient 31 Center Drive MSC 2350 Building 31, Room 4C-32 Bethesda, MD 20892-2350

5 Cabot Place Stoughton MA 02072 Tel: (781) 341-6333 Fax: (781) 341-8333 www.scoliosis.org