SFBAC Links

Little People of America

Chapter 4
District 12

www.bmrn.com/pipeline/morquio-syndrome.php - Pre-Clinical Trail information is needed from Morquio patients at Children's Hospital & Research Center Oakland.
www.dor.kaiser.org/genetics/home/skeletaldysplasiaclinic.htm - Northern California Skeletal Dysplasia Clinic in Oakland provides for the diagnosis and treatment of skeletal dysplasias throughout the lifespan.
www.flickr.com - to gain access to SFBAC and DAAA photos on flickr, please send and e-mail request to Linda Peterson.
www.garyparker.com - Gary Parker, advocate, friend and photographer of Little People and our families at several regional and national events.
www.ggrc.org - Golden Gate Regional Center serves individuals with developmental disabilities and their families who reside in Marin, San Francisco, and San Mateo counties, providing early intervention services to infants between birth and three years of age who are developmentally delayed or believed to be at high risk of having a developmental disability, and genetic counseling and testing for individuals at high risk of having a child with a disability.
arianascure.com - San Francisco Morquio Syndrome web site created by the Kallas family; an excellent resource for information about local events and worldwide research.
Donna Weaver - our local contact for Morquio Syndrome questions and current news about enzyme replacement therapy (ERT) clinical trials of Dr. Shunji Tamatsu, Saint Louis University Pediatrics Department.
www.php.com - Parents Helping Parents (PHP), with headquarters in Santa Clara, provides education and skills training, information, guidance, and peer support for families with the unexpected diagnosis of and ongoing impact of childhood disabilities, including but not limited to intellectual, learning or physical disabilities and special health care needs.

www.lpad12.org - LPA District 12 region (LPA chapters in California and Nevada)
www.lpa-sjvc.org - Sacramento and San Joaquin Valley area (LPA Chapter 8)
lpasandiego.ning.com - San Diego area (LPA Chapter 19)
www.lpalosangeles.org - Los Angeles area (LPA Chapter 6)
www.csmc.edu/3805.html - The International Skeletal Dysplasia Registry, Cedars-Sinai Medical Center in Los Angeles is a referral center for research into the diagnosis, management and etiology of the skeletal dysplasias. The clinic is designed specifically to serve individuals and families with all types of bone and connective tissue disorders - providing expert knowledge and care for patients with these conditions.
www.thepaintedturtle.org - Painted Turtle is the sixth addition to Paul Newman’s family of Hole in the Wall Camps for seriously ill children. It is also the only multi-disease camp and family care center of its kind on the West Coast.
www.lifestepsfoundation.org - Life Steps Foundation, based in Culver City, CA, is dedicated to providing high-quality, cost-effective, home and community-based social services to help children, teens, and adults maximize their independence.
www.hideandseek.org - Hide & Seek Foundation, in North Hollywood, helps raise awareness of Lysosomal Disease and promotes research; includes list of centers and patient societies, organized by state
www.dhs.ca.gov/pcfh/cms/ccs - California Child Services (CCS) is a statewide program that treats children with certain physical limitations and chronic health conditions or diseases.

www.daaa.org - Dwarf Athletic Association of America is an organization established in 1985 to develop, promote and provide quality amateur level athletic opportunities for dwarf athletes in the United States.
www.dsusa.org - Disabled Sports USA
www.lpaonline.org - Little People of America; an excellent resource for recommended reading, adaptive products, medical advisory board members, adoption, scholarships and medical grants, and membership.
www.shrinershq.org/Hospitals/_Hospitals_for_Children - Shriners Hospitals for Children, a network of 22 pediatric hospitals in the U.S., Canada and Mexico providing specialized care for orthopaedic conditions, burns, spinal cord injuries and cleft lip and palate. All services are provided at no charge.
www.hopkinsmedicine.org/geneticmedicine/CR/SKD/ - Greenberg Center for Skeletal Dysplasias, McKusick-Nathans Institute of Genetic Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland
www.nemours.org - Alfred I duPont Hospital for Children in Wilmington, Delaware.
www.ndsaonline.org - National Disability Sports Alliance
www.nod.org - National Organization on Disability
usparalympics.org - U.S. Olympic Committee's Paralympic Division, formed in 2001, coordinates the preparation and selection of athletes to the U.S. Paralympic Teams for summer and winter games.
www.wsusa.org - Wheelchair Sports USA
www.coda-lp.org - Coalition for Dwarf Advocacy (CoDA) advocates for the rights and benefits of individuals with short stature in the areas of medicine, vocation, education, adoption, and public accommodation.
www.aclu.org/studentsrights/discrim/12826pub19971231.html - Ask Sybil Liberty about the right to equality in education.
www.mpssociety.org - National Mucopolysaccharidoses (MPS) Society supports families, research, and increasing public and professional awareness about MPS and related diseases.
tlc.discovery.com/fansites/lpbw/lpbw.html - Discovery Channel web site for the cable television program Little People Big World
www.apple.com/search/ipoditunes/?q=little+people+big+world - iPod downloads of episodes of the television program Little People Big World

comdir.bfree.on.ca/lpc - Little People of Canada
www.sspa.org.au - Short Statured People of Australia
www.daauk.org - Dwarf Athletic Association of the United Kingdom
www.littlepeople.org.nz - Little People of New Zealand
www.mpssociety.co.uk - Society for Mucopolysaccharide (MPS) Diseases, a UK support group; web site includes contact information for MPS groups in many countries.
www.rgaonline.org.uk - Restricted Growth Association (RGA) of the United Kingdom
www.childgrowthfoundation.org - Child Growth Foundation (CGF) in London is an independent charity and receives no central government or local government funding. The Foundation supports children, families of children and adults with growth related problems, and funds research into possible solutions to these growth related disorders.

AdultLPs@yahoogroups.com - forum for adults to discuss issues as they relate to being an adult with dwarfism.
www.litttle.com - a social and informative site. Join in the evening chats from 8pm-12am /EST. The purpose of this site is to get you involved. This site was made for you! Enjoy.
DiastrophicDysplasia@yahoogroups.com - for friends, family and people affected by diastrophic dysplasia dwarfism.
www.Disaboom.com - community for anyone touched by a disability or functional limitation; topics cover health, accessible living, videos, blog posts, chat room discussions, reviews, career center, and accessibility reviews on everything from restaurants to travel hot spots.
dwarfism@yahoogroups.com - interactive forum for discussions related to dwarfism.
F40@yahoogroups.com - forum for paralympic class F40 dwarf athletes to discuss issues related to local, national and international athletic competion.
LPAdoption1@yahoogroups.com - forum for discussions related to the adoption of short-statured children or children with dwarfism.
LPA_Online@yahoogroups.com - official online community for all LPA members and elected officers. Topics may include, but not limited to, information on employment, education, disability rights, adoption of short-statured children, medical issues, clothing, adaptive devices, and parenting tips.
morquio.com/forum - online support for those affected by Morquio Syndrome including parents, adults, doctors, and kids; ask questions about Morquio and finding a doctor.
Morquio@yahoogroups.com - forum for those affected by Morquio Syndrome including parents, adults, doctors, and kids
parentsoflittlepeople@yahoogroups.com - forum for support, advice, and information for parents with a dwarf/short statured child.
parentsoflittlepeople2@yahoogroups.com - forum for parents of Little People (LP) and LP wanting to share with parents.
canadianLPgroup@yahoogroups.com - Canadian discussion group
F-HYPDRR - XLH and ADHR discussion list that helps connect patients with clinicians, researchers, and each other. You can join the list by joining the XLH Network (free), or by sending a request to the subscription manager, colin.steeksma@xlhnetwork.org.

www.abilityawareness.org - Ability Awareness Organization
www.chdct.org - Coalition for Heritable Disorders of Connective Tissue (CHDCT)
www.disabledshopper.com - resource for products and accessories to provide accessibility, physical efficiency, and increased self-sufficiency.
www.disabledtravelersguide.com - to assist people in wheelchairs or with disabilities in traveling to countries around the world. Free book to download (the_disabled_travelers_guide.exe), Disabled Travelers Guide to the World, includes photographs, travel plans, tips on shopping, bargaining, getting low-cost personal guides, hotel upgrades, and more.
www.doubledominance.com - resource about double dominance for couples who both have achondroplasia
www.geocities.com/evchome - Ellis-van Creveld (EvC), Chondroectodermal Dysplasia
www.kumc.edu/gec/support - Genetic and rare conditions
rarediseases.info.nih.gov/asp/resources/glossary_a-e.asp - glossary of terms and definitions for genetic and rare conditions from glossaries prepared by U.S. Congressional Office of Technology Assessment, National Institutes of Health's Understanding Gene Therapy On-line Glossary, and Genetics Education Center, University of Kansas Medical Center.
www.genome.gov/10002096 - glossary of genetic terms created by the National Human Genome Research Institute (NHGRI) to help people without scientific backgrounds understand terms and concepts used in genetic research. Includes pronunciation, audio information, images, and additional links.
www.ncbi.nlm.nih.gov - National Center for Biotechnology Information (NCBI), provides free access to fully searchable public databases of articles from 340 biomedical and life sciences journals, and including genome data analysis for the better understanding of molecular processes affecting human health, syndromes, and disease.
www.ksginfo.org - Spondyloepiphyseal Dysplasia (SED), Spondyloemetaphyseal Dysplasia (SMD), and Kniest Dysplasia
medical.lpaonline.org - The LPA Medical Resource Center is an in-depth reference guide to the approximately 200 different types of dwarfism, intended not just for the lay person, but for medical professionals as well.
www.lp-access.com - Direct Access Solutions, accessiblity products sold to hotels to provide for safe accessability in rooms for traveling Little People; includes list of hotels with these tools available upon request.
www.lprf.org - Little People's Research Fund supports medical treatment, physical therapy, orthopeadic research for little people with skeletal dysplasias, and also supports education and consultation to medical providers and patients.
www.magicfoundation.org - Major Aspects of Growth In Children (MAGIC) is made up of more than 25,000 affected adults and families whose children have medical conditions which affect their growth.
www.morquio.com - international Morquio Syndrome organization; excellent resource for current information
www.nemours.org/hospital/de/aidhc/service/skeletal-dysplasia/resource.html - Skeletal dysplasia resources, Alfred I. duPont Hospital for Children
www.pixelscapes.com/ddhelp - Diastrophic dysplasias organization
www.oif.org - Osteogenesis Imperfecta (OI or brittle bone disorder) Foundation
www.primordialdwarfism.com - Primordial dwarfism
www.potentialsfoundation.org - Osteodysplastic Primordial dwarfism; the mission of the foundation is to enrich the lives of those with Osteodysplastic Primordial Dwarfism by facilitating opportunities for the families to meet, providing for adaptive and medical needs, and furthering research efforts.
www.xlhnetwork.org - International volunteer group for people affected by or interested in XLH (X-linked Hypophosphatemia, or X-Linked Hypophosphatemic Rickets, or Familial Hypophosphatemia, or Vitamin D-Resistant Rickets) or ADHR (Autosomal Dominant Hypophosphatemic Rickets). These conditions are estimated to affect 1 in 20,000 people.
ourlittlemiracle.info - Tyler White has Majewski osteodysplastic primordial dwarfism (MOPD) type II
magicfoundation.org/www/docs/112/russell_silver_syndrome.html - Silver-Russell syndrome (SRS) or Russell-Silver syndrome (RSS)
www.blogsmonroe.com/disability - What is normal? Raising a child with achondroplasia
littlejordansprimordialworld.com - Bridgette and Brad are siblings with Primordial dwarfism
maddysworld.com - Maddy has MOPD Type II dwarfism
littlekenadie.com - Kenadie has a form of Primordial dwarfism
www.short-stature.com - products for people of short stature and their families
www.billybarty.com - Billy Barty web site
lpimages.atspace.com - data and results from the Anthropology/Sociology study by Caroline Shapiro. Caroline has created the website and posted the thesis online, specifically to share with the LP community: Images of Little People in Film and Television
www.dwarfism.smugmug.com - Gary Parker has provided 15 galleries of portraits and photos taken at 2009 DAAA National Games and LPA National Convention events in Brooklyn, NY. Use the password littlepeople (one "word" with no spaces) to view all the galleries and order photo prints or photo-merchandise. Proceeds from online sales will be used to finance photography at the 2010 Nashville DAAA Games and LPA National Convention.

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