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Below you will find a variety of links related to LPA and dwarfism. To find other links please visit www.lpaonline.org . For a list of Yahoo Groups please visit http://www.lpadistrict2.org/D2Links.html
2009 NATIONAL CONFERENCE WEB SITE www.lpanyc2009.org
LITTLE PEOPLE OF AMERICA NATIONAL LINKS
LPA - Homepage http://www.lpaonline.org
LPA - Membership Information http://www.lpaonline.org/mc/page.do?sitePageId=44411
LPA - Medical Information http://medical.lpaonline.org
LPA - Adoptions Information http://adoptions.lpaonline.org
LPA - Online Library http://www.lpaonline.org/mc/page.do?sitePageId=44398
LPA - Local & Regional Links http://www.lpaonline.org/mc/page.do?sitePageId=44405
LPA - Scholarship & Grants Information http://www.lpaonline.org/mc/page.do?sitePageId=44318
LPA - National Officer Contacts http://www.lpaonline.org/mc/page.do?sitePageId=44404
LPA – DISTRICT 2 http://www.lpadistrict2.org
Organizations
Achondroplasia Information Source
CEO: Paula Whitehead
191 HCR 3315
Hubbard, TX 76648
Telephone: (254) 533-2644
E-mail: AIS1INFO@aol.com
Resource for families affected by achondroplasia, with a special emphasis on people living in Central Texas.
Akron Children's Hospital Regional Skeletal Dysplasia Center
Co-coordinator: Annie Yahner, RD, LD
Akron Children's Hospital
300 Locust St., Suite #160
Akron, OH 44302
Telephone: (330) 543-6633
E-mail: ayahner@chmca.org
The Regional Skeletal Dysplasia Center at Akron Children's Hospital is one of only a few in existence that treats both children and adults.
Asociacin ADAC(Asociación para las Deficiencias que afectan al Crecimiento y al Desarrollo)
Manuel Villalobos 41
Sevilla CP 41009 (España)
Telephone and fax: (954) 35 87 86
President: Teresa Barco
E-mail: i.carrasco.000@recol.es
Another excellent Spanish-language site, full of information.
Association for Children with Russell-Silver Syndrome, Inc.
c/o Jodi Zwain
22 Hoyt Street
Madison, NJ 07940
(201) 377-4531 or (313) 242-2219
For families with children who have Russell-Silver intrauterine growth retardation.
Billy Barty Foundation
10222 Crosby Road
Harrison, OH 45030
Telephone: 513-738-4428
E-mail: info@billybartygolfclassic.com
Named for the late founder of Little People of America, the Billy Barty Foundation has a new address, and is now the sponsor of the Billy Barty Golf Classic.
Billy Barty & Friends "The only website authorized by Billy Barty himself"
Camp Little People
Contact: Joyce Davis, camp director
150 Mill St.
Benton, PA 17814
E-mail: clpfamilyfun@jlink.net
Annual summer program for LP youths.
Camp Little People II
Contact: Gale Smith
Telephone: (303) 773-9112
E-mail: rgsmiths@worldspy.net
Sponsored by District 10, Chapter 26, this new program brought together about 25 overnight campers of all ages near Denver, Colorado, in its 1998 debut.
Center for Skeletal Dysplasias
Hospital for Special Surgery
535 East 70th Street
New York, NY 10021
Contact: Erin M. Carter
Genetic Counselor and Clinical Coordinator
Telephone: (212) 774-7332
E-mail: sheat@hss.edu
The Center for Skeletal Dysplasias at Hospital for Special Surgery brings together an interdisciplinary team of health-care professionals committed to improving the quality of life for people with skeletal dysplasias through clinical care, research, education, and patient advocacy.
Alfred I. duPont Hospital for Children's Genetic Program
PO Box 269
1600 Rockland Road
Wilmington, DE 19899-0269
Contacts: Charles I. Scott, MD; Linda Nicholson, MS, MC
Telephone: (302) 651-5916
Fax: (302) 651-5948
E-mail: cscott@nemours.org
Dwarf Artists Coalition
Anne Danberg, President
E-mail: anne@artdance.com
Irene Yuan, Director
E-mail: irene@freshsprout.com
The Dwarf Artists Coalition is sponsored by Little People of America, and is specifically dedicated for LPA members in the visual and compositional arts. Each year, the DAC tries to sponsor an exhibit at the LPA national conference showcasing work from professionals, hobbyists, and children.
Dwarf Athletic Association of America
c/o Janet Brown, executive officer
418 Willow Way
Lewisville, TX 75077
Telephone: (972) 317-8299
Fax: (972) 966-0184
E-mail: daaa@flash.net
Promotes and provides quality amateur-level athletic opportunities for dwarf athletes.
Ellis-van Creveld Syndrome Support Group
Contact: Patti Olesik
17 Bridlewood Trail
Honeoye Falls, NY 14472
Home telephone: (585) 624-8277
E-mail: PattiMO44@aol.com
Greenberg Center for Skeletal Dysplasias
Johns Hopkins Hospital
Center for Medical Genetics
Blalock 1012
Baltimore, MD 21205
Contact: Dee Miller , (410) 614-0977
The Kathryn and Alan C. Greenberg Center for Skeletal Dysplasias is dedicated to the medical care and education of persons with skeletal dysplasias, and to the clinical and laboratory investigation into these conditions. Toward this end, the Center brings together a multidisiplinary team of doctors and investigators dedicated to improving the quality of life for persons of short stature, and furthering basic scientific knowledge about the many causes of dwarfism.
Human Growth Foundation
997 Glen Cove Ave.
Glen Head, NY 11545
(800) 451-6434
E-mail: hgf1@hgfound.org
Supports basic clinical research pertaining to growth disorders. Disseminates information. Encourages development of local parent support groups. Oversees a grant program to support research.
International Skeletal Dysplasia Registry
Cedars-Sinai Medical Center
444 South San Vicente Boulevard, Suite 1001
Los Angeles, CA 90048
Contact: MaryAnn Priore
Telephone: (310) 423-9915
Fax: (310)423-9946
E-mail: maryann.priore@cshs.org
Little People's Research Fund, Inc.
80 Sister Pierre Drive
Towson, MD 21204
Telephone: (410) 494-0055
Toll-free: (800) 232-5773
Fax: (410) 494-0062
Assists little people in getting best medical care. Supports research in causes and treatment of dwarfism. Educates physicians and local medical screening clinics.
MAGIC Foundation
6645 West North Ave.
Oak Park, IL 60302
Telephone: (708) 383-0808
Fax: (708) 383-0899
E-mail: mary@magicfoundation.org
The MAGIC (Major Aspects of Growth in Children) Foundation for Children's Growth and Related Adult Disorders emphasizes short-stature conditions that lend themselves to treatment, such as human-growth hormone. Founded in 1989, it has expanded from 20 original members to more than 6,000 who are now on the MAGIC network.
National Mucopolysaccharidoses (MPS) Society
PO Box 736
Bangor, ME 04402-0736
Telephone: (207) 947-1445
Fax: (207) 990-3074
Works with Morquio, Hurler, and related syndromes. Dedicated to serving parents through networking, physician referrals and professional publication education.
Northern California Regional Skeletal Dysplasia Clinic
Contact: Ericka Peasley Okenfuss, MS
Skeletal Dysplasia Clinic Coordinator
Department of Genetics
Kaiser Permanente
280 West MacArthur Blvd.
Oakland, CA 94611-5693
Telephone: (916) 614-5177
Fax: (916) 614-4768
E-mail: Ericka.Okenfuss@kp.org
(or)
Summer Segal, MS
Skeletal Dysplasia Clinic Coordinator
Department of Medical Genetics
Children's Hospital Oakland
747 Fifty-Second St.
Oakland, CA 94609-1809
Telephone: (510) 428-3885 x2351
E-mail: ssegal@mail.cho.org
The Northern California Regional Skeletal Dysplasia Clinic is a collaboration between Kaiser Permanente and Children's Hospital, Oakland.
Osteogenesis Imperfecta Foundation
804 West Diamond Ave., Suite 210
Gaithersburg, MD 20878
Telephone: (301) 947-0083
Toll-free: (800) 981-2663
Fax: (301) 947-0456
E-mail: bonelink@oif.org
The Osteogenesis Imperfecta Foundation, Inc., also known as the OI Foundation, is the only voluntary national health organization dedicated to helping people cope with the problems associated with osteogenesis imperfecta. The OI Foundation's mission is to improve the quality of life for individuals affected by OI through research to find a cure, education, awareness, and mutual support.
Rhizomelic Chondrodysplasia Punctata (RCP) Support Group
James and Rebecca Maretta Brown, coordinators
137 25th Ave.
Monroe, WI 53566
(608) 325-2717
RCP is a very rare, very severe type of dwarfism. Children are seriously delayed, both developmentally and physically.
Teddy Bear Foundation for Achondroplasia
Contact: Vanessa Loeffler
P.O. Box 148
Fanwood, NJ 07023
Telephone: (908) 889-7666
Fax: (908) 889-7717
E-mail: info@teddybearfoundation.org
Financial help for the families of children who have experienced severe medical problems from unusually acute cases of achondroplasia. Started by the parents of a young achondroplastic girl.
Turner Syndrome Society of the United States
14450 T.C. Jester
Suite 260
Houston, TX 77014
Telephone: (800) 365-9944
Fax: (800) 249-9987
E-mail: ed@turner-syndrome-us.org
Comprising women and girls with Turner syndrome and their families. Fosters research. Provides information to parents, public and medical educators who seek to improve quality of life.
Vermont Regional Genetics Center
Leah W. Burke, MD, Clinical Director
1 Mill St., Box B-10
Burlington, VT 05401
Telephone: (802) 658-4310
Informational links
Dwarfism.org
Intended as a worldwide source of information on dwarfism and on organizations involved with dwarfism. A project of Nick Koonce and Brian Kline.
Danny Black's Dwarfism Pages
Vast quantities of dwarfism-related information.
Diastrophic Dysplasia
Help and resources for one of the most common forms of dwarfism. Page created by Vita Gagne. Includes the newsletter Diastrophic Dynamics, edited by Vita and Mary Carten.
Morquio's Parent Support Group
For families affected by Morquio's syndrome.
MPS Forum Dot Com
The forum is an informational site for families caring for a special-needs child, specifically those with MPS (mucopolysaccharidoses) and ML (mucolipidoses) disorders.
SED/SMD/Kniest Support Group
"This web site is designed to provide information about these medical conditions in clear and understandable English. Its purpose is to give people with these rare skeletal dysplasias support, information, and tools to do their own research."
Youth Support Group for SED/Kniest
"This support group is for children and teens with SED (SED-C, SED-T, SEMD, SED-K) or Kniest. You must be between the ages of 8 and 19 years old to join this group. This group will allow young people to get to know each other informally who share the same form of dwarfism. An adult with SED will be the moderator of the group (this person is also the moderator for the adult SED/Kniest group)."
Cartilage Hair Hypoplasia Information Center
"Welcome to the CHH information site. This site contains links to CHH related information, pictures, links to the listserv and CHH personal websites."
Metratropic Dysplasia Dwarf Registry
"Families Helping Families."
Multiple Epiphyseal Dysplasia Support Group
This condition is also known as Fairbank's disease.
Primordial Dwarfism
An online guide to this rare form of dwarfism.
Progeria Research Foundation
This premature-aging condition is also a form of dwarfism.
Jeune's Syndrome Information/Support Network
"Jeune's Syndrome is an autosomal recessive genetic disorder of the thoracic bone structure. Major features include a small thoracic cage, shortened bones of the arms and legs, and renal dysfunction."
LPs Health Site
A Web resource devoted to keeping LPs healthy. Includes male and female weight charts, diets, exercise regimes, and information about alternative therapies.
Disability Central
"Disability Central's goal, its mission, is to provide a whole world of quality information and resources to be available at the fingertips of anyone who needs it."
Short Persons Support
A wealth of information -- news articles, a library, even a list of famous short people throughout history. Not particularly geared toward dwarfs or dwarfism (the editor, Steven Goldsmith, says he's five-foot-two), but useful nevertheless.
Directory of Parent Centers
A state-by-state resource from the Federation for Children with Special Needs. Where to go in order to get your child the help she or he needs.
Healthlink USA
"Free links to 1000's of health sites, 100's of health topics, featuring treatment, diagnosis, prevention, risk factors, support groups, e-mail lists, personal stories, etc. Updated regularly."
Los Angeles Breakers
Founded in 1986 through the Dwarf Athletic Association of America, the Breakers comprise athletes between two-foot-eight and four-foot-eleven, male and female.
Mini-Hoops Basketball
"Featuring the Canadian Half-Pints Miniature Basketball Team." The emphasis is on education and self-esteem; offers a "Don't Tease" program for kids.
The Tiny Trotters
Another fundraising LP basketball team.
On a Roll Radio
Talk radio on life and disability, hosted by Greg Smith. "On a Roll Radio" is broadcast on Sundays at 9:05 p.m. EST. If your computer is outfitted with RealPlayer, you can listen to it on the Web.
4 foot 10: Little People, Big Lives
A 27-minute film about three dwarfs attending their first LPA convention. Once you arrive at the Aquarius Productions website, search for the exact phrase "4 foot ten."
Short
A 10-minute film written and directed by Imogen Murphy, an Irish filmmaker. Available for viewing online.
Children of Difference Foundation
Started by filmmaker Lisa Abelow Hedley, whose documentary Dwarfs: Not a Fairy Tale, was featured on HBO. You can purchase a copy of the film on this website.
Short Interviews
Kristoffer Elinder has made a video called Short Interviews, comprising conversations with LPs, dance-floor action, and other events at the Boston 2003 LPA National Conference. You can purchase a copy in either VHS or DVD format.
ABILITY Magazine
For and about people with disabilities, including information about the Americans with Disabilities Act, scholarships, employment, housing, and much more. For information about the magazine or about Ability Awareness, a nonprofit organization dedicated to enhancing the quality of life for people with dwarfism through education, employment, housing, and volunteer opportunities, contact ABILITYMagazine@aol.com.
Little People Global
"The only agency to specialise in dwarf talent, Little People Global can help you find the right talent for your film, TV commercial, advertisement or promotional event." Based in Christchurch, New Zealand.
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