LPA District 12

LPA District 12

CHAPTERS 4,6,8,19,37,71,73
CALIFORNIA, NEVADA and HAWAII

California and Nevada Region

bmrn.com/pipeline/morquio-syndrome.php - For Morquio patients: Please provide pre-clinical trail information to Children's Hospital & Research Center Oakland.
lpabayarea.org - San Francisco Bay Area (LPA Chapter 4)
facebook.com/groups/117363174975654/ - Los Angeles area (LPA Chapter 6)
lpa-sjvc.com and facebook.com/profile.php?id=100002792373922 - Sacramento and San Joaquin Valley area (LPA Chapter 8) - Sacramento and San Joaquin Valley area (LPA Chapter 8)
lpasandiego.ning.com - San Diego area (LPA Chapter 19)
cedars-sinai.edu/Patients/Programs-and-Services/Medical-Genetics-Institute/Treatments/Programs/Growth-Disorders.aspx - The International Skeletal Dysplasia Registry and the Growth Disorders Center at 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.
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. During summer there is a week for kids with skeletal dysplasia (dwarfism). Please donate to District 12 in order to send children with skeletal dysplasias to summer camp.
garyparker.com - Gary Parker, advocate, friend and photographer of Little People and our families at several regional and national events.
beyonddifferences.org - Beyond Differences, based in Marin County, offers any school, both public and private, an opportunity to bring the Teen Board to lead a one-hour assembly at no cost. Primarily geared towards 5th through 8th grades, the Beyond Differences Teen Board is itself comprised of 6th graders through 10th graders who have been working together since 2010 and are trained youth leaders. The Beyond Differences Teen Board also offers ongoing support to students through email correspondence, and plans are underway to launch stimulating peer support groups for students who are looking for a safe and accepting way to engage with their peers.
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.
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
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.
childrenshospitaloakland.org/main/departments-services/skeletal-dysplasia-clinic-105.aspx - Northern California Skeletal Dysplasia Clinic in Oakland provides for the diagnosis and treatment of skeletal dysplasias throughout the lifespan.
flickr.com - to gain access to DAAA photos on flickr, please send and e-mail request to Linda Peterson.
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 - SFBAC contact for Morquio Syndrome questions and current news about enzyme replacement therapy (ERT) clinical trials of Dr. Shunji Tamatsu, Saint Louis University Pediatrics Department.
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.

United States

camplittlepeople.org - Camp Little People in Millville, Pennsylvania
understandingdwarfism.org - Understanding Dwarfism Organization
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.
disabledsportsusa.org - Disabled Sports USA
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.
diseaseinfosearch.org/Dwarfism/2355 - Genetic Alliance, national library of medicine resources
shrinershospitalsforchildren.org - 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.
hopkinsmedicine.org/geneticmedicine - McKusick-Nathans Institute of Genetic Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland
akronchildrens.org/cms/conditions/dwarfism/index.html - Regional Skeletal Dysplasia Center, Akron Children's Hospital, Akron, OH
nemours.org - Alfred I duPont Hospital for Children in Wilmington, Delaware
imgen.bcm.tmc.edu/molgen/cg/clinics/skeletaldysplasia.html - Skeletal Dysplasia Clinic, Baylor College of Medicine, Houston, TX
texaschildrenshospital.org/carecenters/Genetics/SkeletalDysplasia/Skeletal_Dysplasia.aspx - Texas Children’s Skeletal Dysplasia Center, Houston, TX
nod.org - National Organization on Disability
glasa.org - Great Lakes Adaptive Sports Association promotes and supports the optimal development and well being of youth and adults who have a primary physical or visual impairment through the provision of inclusive recreational, fitness and competitive sports activities and to offer opportunities for empowerment through education, leadership and training in collaboration with community-based organizations.
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.
wasusa.org - Wheelchair and Ambulatory Sports USA
coalitionofdwarfadvocacy.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.
aclu.org/racial-justice_womens-rights/ask-sybil-liberty-about-your-right-equality-educati - Ask Sybil Liberty about the right to equality in education.
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

International

childrenswish.org - Children's Wish Foundation International
comdir.bfree.on.ca/lpc - Little People of Canada
childrenswish.ca/index_2007.php/en/welcome - Children's Wish Foundation of Canada
sspa.org.au - Short Statured People of Australia
dsauk.org - Dwarf Athletic Association of the United Kingdom
littlepeople.org.nz - Little People of New Zealand
mpssociety.co.uk - Society for Mucopolysaccharide (MPS) Diseases, a UK support group; web site includes contact information for MPS groups in many countries.
rgaonline.org.uk - Restricted Growth Association (RGA) of the United Kingdom
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.

Online Discussion Groups

AdultLPs@yahoogroups.com - forum for adults to discuss issues as they relate to being an adult with dwarfism.
DiastrophicDysplasia@yahoogroups.com - for friends, family and people affected by diastrophic dysplasia dwarfism.
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.
ilivewithadisability.com - social networking platform for people with disabilities and their families. ILWAD.com offers a safe and friendly atmosphere, which provides for a dynamic online support community with the best that both Facebook and Twitter have to offer.
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.
Morquoi Syndrome FaceBook Group - For people of all ages who have Morquio A or B syndrome or are family/friends of those with Morquio, to chat, share tips, questions, concerns.
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.

Additional Resources

abilityawareness.org - Ability Awareness Organization
bestcolleges.com/resources/disabled-students - College Transition Resources for Students with Disabilities
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
billybarty.com - Billy Barty web site
chdct2.org - Coalition for Heritable Disorders of Connective Tissue (CHDCT)
cinderellaofboston.com - Cinderella Shoes offers women's shoe sizes 2 to 5-1/2 from very thin to more wide.
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.
doubledominance.com - resource about double dominance for couples who both have achondroplasia
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.
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.
ghr.nlm.nih.gov/search?query=dwarfism&Search= - Genetics Home Reference is the National Library of Medicine's web site for consumer information about genetic conditions and the genes or chromosomes related to those conditions.
ksginfo.org/newdiag.htm - Spondyloepiphyseal Dysplasia (SED), Spondyloemetaphyseal Dysplasia (SMD), and Kniest Dysplasia
kumc.edu/gec/support - Genetic and rare conditions
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.
resmed.com - ResMed offers medical products for the treatment and management of respiratory disorders, with a focus on sleep-disordered breathing.
maddysworld.com - Maddy has MOPD Type II dwarfism
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.
magicfoundation.org/www/docs/112/russell_silver_syndrome.html - Silver-Russell syndrome (SRS) or Russell-Silver syndrome (RSS)
nemours.org/locations/nemours-dupont.htm - Skeletal dysplasia resources, Alfred I. duPont Hospital for Children
oif.org - Osteogenesis Imperfecta (OI or brittle bone disorder) Foundation
pixelscapes.com/ddhelp - Diastrophic dysplasias organization
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.
primordialdwarfism.com - Primordial dwarfism
ourlittlemiracle.info - Tyler White has Majewski osteodysplastic primordial dwarfism (MOPD) type II
rarediseases.info.nih.gov - 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.
medicalnewstoday.com/releases/205172.php - BioMarin Pharmaceutical plan for phase 1 clinical trial program for BMN-111 peptide therapy for the treatment of achondroplasia.
Note: Ericka Okenfuss, LPA Medical Resource Director and Medical Advisory Board Member, has prepared a summary document with answers to basic questions about this research. Little People of America does not endorse the work of BioMarin or any related company that pursues dwarfism research. At this time, LPA's goal is to stay updated on these activities and to keep the membership informed. As more information about such research becomes available, LPA plans to develop position papers related to research developments.
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.