Happy 1 st Birthday CPODD! Lunch & Learn January 3, 2007
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1 Happy 1 st Birthday CPODD! Lunch & Learn January 3, 2007
2 Today s s Lunch & Learn Demyelinating Disease CPODD & Pediatric MS Centers of Excellence 2006 Year in Review What s ahead
3 Demyelinating Disease neurons = cells that help make up your brain and spinal cord myelin = insulates the neuron s axon demyelination = destruction of myelin
4 Pediatric-Onset Demyelinating Disease Pediatric-Onset = disease shows up in childhood Demyelinating Disease = 1) CIS Clinically Isolated Syndromes ON Optic Neuritis TM Transverse Myelitis (Others ) 2) ADEM Acute disseminated encephalomyelitis 3) MS Multiple Sclerosis 4) Devic s Syndrome traverse myelitis + optic neuritis
5 Demyelinating Disease The exact cause is unknown. Many researchers believe it is an autoimmune disease. Immune system = defends the body against viruses or bacteria. autoimmune disease = the body attacks its own tissue. In this case, myelin is attacked. Scientists do not know why the immune system does this. Most agree that several factors are involved.
6 Transverse Myelitis ADEM Optic Neuritis
7 Multiple Sclerosis
8 CPODD: Pediatric MS Center of Excellence Why create a special Center? Kids often start out with different symptoms than adults Diagnosis by MRI not always the same Unclear information on treatment Kids may help explain causes of MS in adults!
9 Pediatric MS Centers of Excellence 10.6 million from National MS Society to fund 6 centers nationwide Other Centers: New York: Stony Brook New York: Buffalo Massachusetts: Mass General (Harvard) Minnesota: Mayo (Rochester, MN) California: Univ. California San Francisco
10 Pediatric MS Centers of Excellence UAB CPODD Birmingham, AL National Pediatric MS Center Stony Brook Univ. Long Island, NY Partners Pediatric MS Center at MGH Boston, MA National Multiple Sclerosis Society Mayo Clinic Pediatric MS Center Rochester, MN Jacobs Neurological Institute Pediatric MS Center Buffalo, NY UCSF Regional Pediatric MS Center San Fran., CA
11 CPODD Services Neurological Evaluations Neuro-psychological Testing Access to other specialists School & Education Support Support transitioning to adult care Information!!! Website Lunch & Learns (will be posted on website) Medications Working with your school Coping with emotions/ stress And more!
12 CPODD staff Pediatric Neurologist: Jayne Ness, MD-PhD Adult Neurology MS experts: Khurram Bashir, MD, MPH Chris LaGanke, MD Neuro-psychologist: Joe Ackerson, PhD Child Psychiatrist: Sam Rubin, MD Nurse Practitioner: Yolanda Harris School Psychologist: Laurie Lou Smith Social Worker: Lynda Williams Program Coordinator: Sarah Middleton Physical Therapy: Connie Cushing Occupational Therapy: Michelle Puckett, Neuro-ophthalmologist: Mike Vaphiades, MD Rehabilitation Medicine: Drew Davis, MD Charlie Law, MD Pediatric Urology: Anthony Herndon, MD David Joseph, MD Pediatric Neuro- Radiology Dan Young, MD Tim Frye, MD Biostatistics Gary Cutter, PhD
13 2006 Progress Report By the end of 2006, CPODD saw patients from: Alabama Florida Georgia Louisiana Mississippi North Carolina South Carolina January December Report Patients Seen New Patients Male Female Under 6yo 6-11yo 12-18yo Over 18yo White Black Hispanic Live more than 100 miles from hospital
14 What s s Ahead for 2007 CPODD Clinic will be held twice a month 1 st & 3 rd Wednesday in the afternoon CPODD Website to go live NMSS develops new materials just for kids Education for Teachers & School Staff Research results begin to form
15 Research at CPODD CPODD Registry Gather information to see trends Information sources: Medical records Other questionnaires All identifying information is removed Other Research Projects Biomarker Study Leftover blood and spinal fluid is tested All CPODD research is voluntary and confidential.
16 Research at CPODD Some Goals of Research Understand demyelinating diseases in children Recognize the disease quickly and provide effective treatments Support the patient and family not only physically, but emotionally, academically, and socially. CPODD also supports the mission of the National Multiple Sclerosis Society: to end the devastating effects of multiple sclerosis
17 CPODD & NMSS Contacts CPODD Sarah Middleton, Coordinator Website National Multiple Sclerosis Society, Alabama Chapter Ben Tremonte, Program Manager , FIGHT MS Website
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