The Following Resources have been provided by the hundreds of members who use our forums. (http://www.amcsupport.org/forum) THANK YOU to everyone who has provided a resource!!!!

Doctors and Hospitals known for treating AMC

Hospitals

Hospitals that have Arthrogryposis Clinics

AI Dupont Hospital for Children- Wilmington Delaware- Arthrogryposis Clinic

Please contact Marnie King directly for information about the Arthrogryposis clinic.

Dr. Jayakumar, lead orthopedist 302-651-5911

Marnie King, OTR/L Mking@nemours.org 302-651-6013

Maureen Donohoe, P.T. Rdonohoe@nemours.org 302-651-4386

http://www.nemours.org/service/medical/orthopedics/arthrogryposis.html

New York University Hospital for Joint Diseases Center for Children- Arthrogryposis Center

To Make an Appointment: Call 212-598-6205

http://www.med.nyu.edu/hjd/centerforchildren/patient/arthrogryposis.html

Seattle Children’s Hospital- Arthrogryposis Clinic Quarterly

http://www.seattlechildrens.org/

To Make an Appointment contact:

Karen Peterson, MS W6839, Patient Care Coordinator, Rehab Medicine

(206)987-2180

Karen.peterson @ seattlechildrens.org (remove spaces)

Shriners Hospitals for Children- Los Angeles- Clinic held 2nd Thursday of every month.

Contact: Linda Howat, NP, Clinic Coordinator

Phone: 213-388-3151

http://www.shrinershospitalsforchildren.org/Hospitals/Locations/LosAngeles.aspx

Shriners Hospitals for Children- Houston- Clinic held once a month.

Contact: Cathy Moniaci, RN, MS, Director of Patient Care

713-793-3702 or rwendler@shrinenet.org

http://www.shrinershq.org/Hospitals/houston/

Shriners Hospitals for Children (a network of 22 endowed (free Care) hospitals) 20 of which treat orthopedic issues like Arthrogryposis

Admissions information : http://www.shrinershospitalsforchildren.org/en/CareAndTreatment/ApplyForCare.aspx   or 1-800-237-5055

They are located in the following cities, see this link for more information on each one: http://www.shrinershq.org/Hospitals/_Hospitals_for_Children/

Chicago, Illinouis

Erie, Pennsylvania

Greenville, South Carolina

Honolulu, Hawaii

Houston, Texas

Salt Lake City Utah

Lexington Kentucky

Los Angeles, California

Sacramento, California

Philadelphia, Pennsylvania

Portland, Oregon

Shreveport, Louisiana

Spoke, Washington

Springfield, Massachusetts

St. Louis, Missouri

Tampa, Florida

Minneapolis, Minnesota

Montreal, Quebec, Canada

Mexico City, Mexico

Scottish Rite Hospital for Children- Dallas Texas

http://www.tsrhc.org/

Doctors:

Dr. Judith Hall-Clinical Geneticist- Has done extensive Research on Arthrogryposis

Sees Patients at the Seattle Children’s Hospital AMC Clinic

All About Dr. Hall

http://www.ecmaj.com/pdfs/hall.pdf

http://en.wikipedia.org/wiki/Judith_Goslin_Hall

Dr. Harold Van Bosse (Lower Extremity Pediatric Orthopedic Surgeon) - Philadelphia Shriners

All About Dr. van Bosse

http://www.med.nyu.edu/orthosurgery/faculty/bio.html?bio=vanboh01.html

http://www.shrinershq.org/Hospitals/Philadelphia/About/MedicalStaff/~/Media/Hospitals/PDF/VanBosse_CV.pdf

Dr. Scot Kozin (Orthopedic Surgery of the Hand and Upper Extremities)- Philadelphia Shriners

All about Dr. Kozin

http://www.shrinershq.org/sitecore/content/Hospitals/Philadelphia/About/MedicalStaff/~/Media/Hospitals/PDF/PHLkozincv.pdf

http://www.shrinershq.org/Hospitals/Philadelphia/

To read about more doctors & hospitals that parents & AMC adults are very happy with for treatment of their or their child’s AMC: Login to the forums: http://www.amcsupport.org/forum and then click this link http://www.amcsupport.org/forum/viewtopic.php?f=6&t=32


 

Media related to AMC

Books:

Arthrogryposis: A Text Atlas- By Dr. Lynn Staheli, Dr. Judith Hall and Dr. Kenneth Jaffe.

To Buy it: http://www.amazon.com/Arthrogryposis-Atlas-Lynn-T-Staheli/dp/0521571065/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1205361933&sr=8-1 (maybe not be the cheapest place to buy it)

To View a limited # of pages: http://books.google.com/books?id=l3KPVwhDgDgC&pg=PP1&dq=arthrogryposis&ei=_ycmR9_fEqjA7ALa2I1A&sig=8DK9SzThp6uhRS2v6XLum2_O8J8

Libraries that carry it:

Many University Libraries carry it as part of their medical school library, the following Universities have it somewhere in their library system:

New York University- Medical School Library

University of Michigan at Ann Arbor- Med School

University of Washington

University of Florida

University of California

Tarrant County College Library at the South Campus in Ft. Worth, TX

The Ohio State University

Wright State University

(Just google the names of these University’s to find the location of their respective libraries for access to the book)

Hospitals that have it: (they may or may not let you borrow it or photocopy it)

Phoenix Children’s Hospitals

Do you have a text atlas?

Have a Text Atlas lying around collecting dusk? Consider donating it to AMCSI for other parents to use or find another family close to you via the forums (http://www.amcsupport.org/forum) and loan it to them.

Just a Krooked Kid

By: Goodwin Hale

An Autobiography of a man born in 1931 with Arthrogryposis

To Buy: http://www.amazon.com/Just-Krooked-Kid-Goodwin-Hale/dp/1887150021/ref=pd_bbs_sr_2?ie=UTF8&s=books&qid=1205363103&sr=8-2

Thank my Lucky Scars

By Ward Foley

An Autobiography of a man with Arthrogryposis

To Buy: http://www.wardfoley.com/Ward_Foley/Store.html

God Didn’t Make Me a Woman Because I Have Enough Problems Already

By Ward Foley

An Autobiography of a man with Arthrogryposis

To Buy: http://www.wardfoley.com/Ward_Foley/Store.html

A Child of Promise

By Cheryl Green

An Autobiography of a woman with Arthrogryposis

To Buy: http://www.amazon.com/Child-Promise-Journey-Tragedy-Triumph/dp/0805424407/ref=ntt_at_ep_dpt_2

Videos

Bartholomew's Gift

The story of the a musician with Arthrogryposis

To Buy: http://www.amazon.com/Bartholomews-Gift/dp/B000F6ZELE/ref=pd_bbs_sr_3?ie=UTF8&s=dvd&qid=1205364975&sr=8-3

A Day with Theresa: An Adult with Arthrogryposis

To Buy: http://www.theresalucas.com or http://www.amcsupport.org/forum/viewtopic.php?f=6&t=4115&p=41400&hilit=my+DVD#p41400 (must be logged in to view)

Documentaries

A Documentary is being made about living with Arthrogryposis

To follow the progress of this documentary: http://www.amcdocumentary.org/
 

Personal Journey’s of Those Living with Arthrogryposis

Our Members, Their Stories

http://www.amcsupport.org/ourmembers.htm

28 Members Stories of living with AMC (includes Adults, children & Babies)

For Abby- a 6-yr old girl living with AMC

http://www.forabby.com/

Website for Ani's (founder of AMCSI) daughter Abby who was born with AMC.

Theresa Lucas- An Artist, Adult with AMC

http://www.theresalucas.com

Ward Foley- An Adult with AMC (Insprational Speaker & 2x Author)

http://www.wardfoley.com

Jennifer Keeton, An adult with AMC

http://perfectly-unperfect-jen.blogspot.com/

Tracey- An Adult with AMC

http://traceyschalk.webs.com

Luca “Lazylegz” Patuelli

http://www.lazylegz.com

Disabilities Unlimited- Bill Micklitz- An Adult with AMC

http://disabilitiesunlimited.org/about2/

A site for positive motivation and much more from Bill Micklitz, also born with arthrogryposis.

Stories, IEP info, designs, and more.

Sean and Arthrogryposis

http://www.seanandamc.com/

Have a website about you or your child’s journey you’d like to share?

If you are a person living with AMC or the parent/ caregiver of an AMCer and have a website about your child’s journey with Arthrogryposis and would like it listed here please email bod@amcsupport.org

Transportation Resources

Miracle Flight for Kids:

http://www.miracleflights.org- helps in getting children and their families to medical appointments by arranging free air travel to the child’s appointments

Air Care Alliance

800-296-1217

http://www.aircareall.org/ -The Air Care Alliance is a nationwide league of humanitarian flying organizations whose volunteer pilots are dedicated to community service

American Airlines, Advantage Miles for Kids in Need

http://www.awishwithwings.org/AAKids.htm- Helps those in financial need. 1-817-963-8118.

Angel Flight, Inc. People Flying People in Need

918-749-8992

http://www.angelflight.com/ Angel Flight is a non-profit organization of pilots and other volunteers dedicated to serving the community by arranging free private air transportation for medical patients who cannot afford to utilize normal, commercial transportation

Angel Flight America, Inc.

http://www.airlifeline.org and http://www.angelflightamerica.org Angel FlightÆ America (AFA) provides access for people in need seeking free air transportation to specialized health care facilities or distant destinations due to family, community or national crisis.

Children's Flight of Hope

http://www.childrensflightofhope.org/ Children's Flight of Hope provides free, private air transportation to and from medical facilities for children in need. "With our organization-owned aircraft and crew of experienced volunteer pilots, we transport children and their families to and from hospitals throughout the eastern United States. We seek to ensure that children in our service area (North Carolina) are not denied access to medical treatment at distant facilities due to either financial need or a medical condition that precludes travel via ground or commercial aircraft."

Delta AirSky Wish at United Way

Free flights, no financial requirements. Call 1-800-892-2757 ext. 285, Christina Walker. Difficult to get into as often short on miles.

Continental Careforce

Bob Jack at 1-281-261-6626.

Lifeline Pilots

309-697-6865

http://www.lifelinepilots.org/ LifeLine Pilots is a private, non-profit organization that provides people in medical and financial distress with access to free air transportation on small (4-6 seat), private aircraft for health care and other compelling human needs.

Mercy Medical Airlift

http://www.mercymedical.org/ (MMA) is a non-profit organization dedicated to serving people in situations of compelling human need through the provision of charitable air transportation. MMA is totally supported through charitable giving and the services of volunteer pilots and office assistants.

Midwest Express Miracle Miles

One free flight, thereafter flights are discounted. No financial requirements. Call Natalie Fuerst at 1-414-570-3644.

National Patient Air Travel HELPLINE

http://www.patienttravel.org/ Provides information about all forms of charitable, long-distance medical air transportation and provides referrals to all appropriate sources of help available through the Angel Flight America Network. Call 1-800-296-1217. Once NPATH, now also known as http://www.patienttravel.org.

Northwest Airlines, Kid Cares program

http://www.nwa.com/corpinfo/aircares/about/kidcares.shtml The Northwest Airlines KidCares medical travel program provides air travel to children age 18 and younger who are unable to receive treatment in their home area. Those with financial need have priority. 1-612-726-4206.

TWA Operation Liftoff

http://www.operationliftoff.com/ "Providing special trips to children who are facing life threatening illness." Free flights, no financial requirements. Operation Liftoff provides air transportation for children with a life threatening illness for a wish trip or treatment trip.

Midwest Express Miracle Miles

Natalie Fuerst at 1-414-570-3644- One free flight, thereafter flights are discounted. No financial requirements.

American Airlines:

1-817-963-8118 Debbie Ryan-AA gives twice-in-a-lifetime free flights for child and both parents

Southwest Airlines

1-214-792-4103 Tracy Martin-Provides two flights per year for child and both parents

Air Care All

http://www.aircareall.org/listings.htm -Another Comprehensive List of providers of free Flights

**Info taken from this website. These organizations may or may not offer assistance to kids with Athrogryposis but never hurts to ask. http://www.acor.org/ped-onc/resources/airlineflights.html

Adoption

Links to organizations that may have children with AMC available for adoption

Reeces Rainbow

http://reecesrainbow.org/

An organization dedicated to helping children with Down Syndrome find their forever families. They also have an “other angels” page where there have been and are children with Arthrogryposis available for adoption from foreign countries. See our Newsletter for the children currently listed on this site who have AMC and need a family.

Rainbow Kids

http://specialneedsadoption.rainbowkids.com/Arthrogryposis_-_Joint_Disorders.aspx

Adaptive Equipment Links

Catalogs

Enabling Devices Product Catalog

http://enablingdevices.com/catalog

AdaptiveMall

http://www.adaptivemall.com

Feeding

Mealtime Partners, Inc.
We Specialize in Assistive Dining Equipment and Accessories
http://www.mealtimepartners.com/

Assistive Feeding Arm Orthosis

http://www.acpoc.org/library/1986_02_023.asp

Ark Therapeutic

http://arktherapeutic.com

Steady Spoon

http://www.steadyproducts.com/design3.htm

FunHase Bikes Adaptive Bike

http://www.hase-bikes.com/125-1-product-overview.html

Amtryke Adaptive Bike

http://www.ambucs.org/amtryke/

Adaptive Power Car

http://www.mobility4kids.com/main/newboss.html

Freedom Concepts Adaptive Bikes

http://freedomconcepts.com/

Lifts, Ramps, Vehicles

American Wheelchairs

http://www.americanwheelchairs.com

Braun Mobility

http://www.braunmobility.com/index.asp

Columbus Mobility Specialists

http://www.columbusmobility.com/

Therapy

Hip Helpers

http://www.hiphelpers.com/

Hip HelpersÆ Support Shorts are the answer to excessive hip abduction in babies and toddlers with low muscle tone.

Theratogs

http://www.theratogs.com/

Fabrifoam

http://www.fabrifoam.com/

PediWrap

http://www.fresnelprism.com/PediWrap.html

Pen Again- Easy to Hold Pen

http://www.penagain.com/
 

Technology

IntelliTools- Accessible Computer Equipment/ Software

http://www.intellitools.com/
 

Seating

Butterfly Position Pillow

http://www.snuglbuds.com/butterfly.htm

Adaptive Car Seats

http://www.adaptivemall.com/allcarseats.html

Employment

The Office of Disability Employment Policy

The Office of Disability Employment Policy provides national leadership by developing and influencing disability-related employment policy and practice affecting the employment of people with disabilities.

http://www.dol.gov/odep/

Department/ Bureau of Vocational Rehabilitation

Every state has a Department or Bureau of Vocational Rehabilitation that can help with gaining employment. Google Vocational Rehabilitation and your state to find a DVR/ BVR near you

Training/ Education

DisabilityInfo.gov

https://www.disability.gov/

DisabilityInfo.gov provides quick and easy access to comprehensive information about disability programs, services, laws and benefits. You can begin your search by visiting any of the nine subject areas at the top of this page. To find disability resources in your state just click on the Find State and Local Resources map located in each of these subject areas.

Wrights Law

http://www.wrightslaw.com/

Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities.

A History of Developmental Disabilities

http://www.mnddc.org/parallels/index.html

The DBTAC National Network of ADA Centers

http://www.adata.org/

The DBTAC National Network of ADA Centers is comprised of 10 regional centers that provide information, training and technical assistance on the Americans with Disabilities Act. The centers are funded by the National Institute on Disability and Rehabilitation Research under the U.S. Department of Education.

Language

Sign Language Resource Guide

http://www.impactsigns.com/corporate-sign-language-resource-guide

Online Sign Dictionary

http://www.signwithme.com/002_browse_signs.asp

My First Signs

http://www.onestepahead.com/product/osa/362756.html

Signing Time

http://www.signingtime.com/

Clubs/ Organizations

Tetra Society of North America

Dedicated to Assisting People with Disabilities to Achieve an Independent and Fulfilling Life in the Community.

http://www.tetrasociety.org/

Here is a link to their projects. Some pretty cool stuff there.

http://www.tetrasociety.org/devices/index.php

Variety Club

http://www.usvariety.org/

Rotary International

http://www.rotary.org/en/Pages/ridefault.aspx

Rotary is a worldwide organization of more than 1.2 million business, professional, and community leaders. Members of Rotary clubs, known as Rotarians, provide humanitarian service, encourage high ethical standards in all vocations, and help build goodwill and peace in the world.

Shriners

http://www.shrinershq.org/

Shriners of North America is an international fraternity based on fun, fellowship and the Masonic principles of brotherly love, relief and truth. There are approximately 375,000 members from 191 temples (chapters) in the U.S., Canada, Mexico and the Republic of Panama Shriners of North America support Shriners Hospitals for Children, a one-of-a-kind international health care system of 22 hospitals dedicated to improving the lives of children by providing specialty pediatric care, innovative research and outstanding teaching programs. Since 1922, Shriners Hospitals for Children have significantly improved the lives of more than 865,000 children.

 

Surgery

For all the parents facing Hip Surgery.

http://www.hip-baby.org/

Discussion Group Associated with Hip-Baby.org

http://groups.yahoo.com/group/Hipbaby/

Accessible Sports Teams

The Miracle League- Baseball

http://www.miracleleague.com/

Kentucky

http://www.bluegrassmiracleleague.org/

Ohio

http://www.ohiomiracleleague.org/

South Carolina

http://www.carolinamiracleleague.com/

Boundless Play Grounds

Find a boundless playground in your area

http://www.boundlessplaygrounds.org/

Preston’s Hope

http://www.prestonshope.com/

Greater Cleveland Area

 

Service Animals

NEADS (Dogs For Deaf and Disabled Americans)

http://www.neads.org/

NEADS (Dogs For Deaf and Disabled Americans), of Princeton, MA, is a non-profit organization, organized under section 501c (3) of the IRS code. NEADS was established in1976 to train and provide rescued dogs and donated puppies to assist people who are deaf or physically disabled in leading more independent lives at work, at home and at school. These assistance dogs become an extension of their owners and bring security, freedom, independence and relief from social isolation to their human partners.

KSDS, IN.

124 W. 7th Street

Washington, Ks 66968

785-325-2256

KSDS, Inc. is a 501 (c) 3 non-profit organization dedicated to the training and placement of canine assistance to individuals with disabilities.

KSDS provides canine assistance in two areas of service:

Guide Dogs: These specially trained dogs provide mobility assistance to those individuals who are blind or visually impaired.

Service Dogs: These assistance dogs are used by people with other physical disabilities. They are trained to help pull a wheelchair, retrieve articles, provide balance, turn lights on/off, and open doors.

Canine Companions for Independence

National Organization that places service dogs with people with disabilities

http://www.cci.org

Helping Hands Monkeys

Monkey Helpers for people with disabilities

http://www.monkeyhelpers.org/

Law, Wills, Estate Plans

Laws

Americans with Disabilities Act

http://www.ada.gov/adahom1.htm

The ADA prohibits discrimination and ensures equal opportunity for persons with disabilities in employment, State and local government services, public accommodations, commercial facilities, and transportation

Wrights Law

http://www.wrightslaw.com/

Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities.

Wills/ Planning

Special Needs Trust Administration
 

The Special Needs Trust Administration Manual is an invaluable guide for anyone who is managing a Special Needs Trust for a person with disabilities

Special Needs Legal Planning

www.specialneedsanswers.com 

 

 

Government Information: Medical Related

DisabilityInfo.gov

http://www.disabilityinfo.gov/digov-pub ... lderId=500

DisabilityInfo.gov provides quick and easy access to comprehensive information about disability programs, services, laws and benefits. You can begin your search by visiting any of the nine subject areas at the top of this page. To find disability resources in your state just click on the Find State and Local Resources map located in each of these subject areas.

Understanding Supplemental Security Income

http://www.socialsecurity.gov/ssi/text- ... ng-ssi.htm

Home Page 2008 Edition

A Desktop Guide To SSI Eligibility Requirements

http://permanent.access.gpo.gov/lps4345/11001.html

Understanding Supplemental Security Income

http://www.socialsecurity.gov/ssi/text-child-ussi.htm SSI for Children2008 Edition

SSI Disability Planner Adults Disabled Before Age 22

http://www.ssa.gov/dibplan/dacpage.shtml

Here's a link talking about SSI regulation and how to appeal a decision.

http://www.ssa.gov/d&s1.htm#ssi

Housing Modifications

Easter Seals and the CENTURY 21Æ System's Easy Access Housing for Easier Living Program

http://www.easterseals.com/site/PageSer ... using_tips

Building a Universal Design Dream Home

http://www.unitedspinal.org/publication ... ream-home/

A primer for building human-centered homes

The Center for Universal Design (CUD)

http://www.design.ncsu.edu/cud/

The Center for Universal Design (CUD) is a national information, technical assistance, and research center that evaluates, develops, and promotes accessible and universal design in housing, commercial and public facilities, outdoor environments, and products. Our mission is to improve environments and products through design innovation, research, education and design assistance.

A House for All Children

http://www.ahouseforallchildren.njit.edu/

United Cerebral Palsy

 http://www.ucp.org/

The links within this section will point you toward a wealth and variety of informational, technical, funding, legal and other resources to assist with housing issues.

School

Partners in Public Policy Making

http://www.partnersinpolicymaking.com/online.html

Info about Early Intervention under IDEA Part C

www.nectac.org

To find out more about Part C of IDEA (birth to three programs also called early intervention) and Part B of IDEA (preschool and school aged programs from 3-21 [26 in Michigan]) go to www.nectac.org they have links to each state program, the federal office, known as OSEP the Office of Special Education Programs, and the different research projects funded by OSEP.

The Beach Center

http://www.beachcenter.org/default.aspx?JScript=1

The beach center is another great program which is housed at the University of Kansas and run by two wonderful people people, Ann and Rud Turnbull, in addition to being researchers and educators they are the parents of a young man with multiple disabilities. One of their current projects is a Community of Practice, or board like this one where parents, professionals and researchers can get together to link research and practice and share experiences.

DisabilityInfo.gov

http://www.disabilityinfo.gov/digov-pub ... lderId=500

DisabilityInfo.gov provides quick and easy access to comprehensive information about disability programs, services, laws and benefits. You can begin your search by visiting any of the nine subject areas at the top of this page. To find disability resources in your state just click on the Find State and Local Resources map located in each of these subject areas.

Wrights Law

http://www.wrightslaw.com/

Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities.

The Americans with Disabilities Act (ADA)

http://www.ada.gov/adahom1.htm

National Dissemination Center for Children with Disabilities.

http://www.nichcy.org/

NICHCY stands for the National Dissemination Center for Children with Disabilities. We serve the nation as a central source of information on: disabilities in infants, toddlers, children, and youth, IDEA, which is the law authorizing special education, No Child Left Behind (as it relates to children with disabilities), and research-based information on effective educational practices. Feel free to communicate with us in English or Spanish. We're here, we're listening, and it would be our pleasure to help you. In the meantime, we invite you to explore our Web site and make full use of all that we offer here.

http://www.nichcy.org/states.htm

Resources By State

Free Brochures from the US Dept of Education

http://edpubs.ed.gov/

Need literature on your rights/ responsibilities as a parent or as a person with a disability? This website allows you to order brochures published by the US Dept of Ed related to anything under the sun, disabilities is just one of them.

Protecting Students with Disabilities: Frequently Asked Questions about Section 504 and the Education of Children with Disabilities:

http://www.ed.gov/about/offices/list/ocr/504faq.html

Section 504 of the Rehabilitation Act of 1973 states "No otherwise qualified person with a disability in the United States. . .shall, solely on the basis of disability, be denied access to, or the benefits of, or be subjected to discrimination under any program or activity provided by any institution receiving federal financial assistance."

Family Education Rights & Privacy Act

http://www.ed.gov/policy/gen/guid/fpco/ferpa/index.html

FERPA is a Federal law that protects the privacy of student education records and gives specific rights to parents. The law applies to all schools that receive funds under an applicable program of the U.S. Department of Education

The Families & Advocates Partner for Education

http://www.fape.org/

(FAPE) project is a partnership that aims to improve the educational outcomes for children with disabilities. It links families, advocates, and self-advocates to information about the Individuals with Disabilities Education Act (IDEA). The project is designed to address the information needs of the 6 million families throughout the Country whose children with disabilities receive special education services.

 

Therapy

Hippo Therapy

North American Riding for the Handicapped Association, Inc. (NARHA)

http://www.narha.org/

A website where you can search for places that offer Hippo Therapy. Just click "Find a Center" at this link

Music Therapy

Songs of Love

http://www.songsoflove.org/

The Songs of Love Foundation is a nonprofit organization dedicated to providing personalized songs for Children & teens facing tough medical or emotional challenges, free of charge

Art Therapy

Angel Boy Art Inc.

www.AngelBoyArt.com

Angel Boy Art is a non-profit organization founded in 2006 because of a special young artist named Louis Angelo Vitale, Jr. When Louie was ten months old he began painting as part of his physical therapy. It soon became clear that the painting was not only good physical therapy, but also a means of communication and building confidence. Louie's mother, an artist herself, founded Angel Boy Art after seeing the immense benefits art brought her son.

Wish Granting

The Aliah Sweet Fragile Hearts Foundation

http://www.fragilehearts.org

California Only
Mission: The foundation's mission is to grant wishes that enrich the lives of siblings of children with severe multiple disabilites.

Hugs and Hopes for Sick Children

http://www.hugsandhope.org/clublinks.htm

Fun and Useful Links

On this site you can find links for: Links for Kids / Support & Encouragement / Health & Illness Info / Assistance & Charities / Organizations that grant wishes of sick children: / Misc. / Freebies

Durable Medical Equipment Exchanges/ Foundations

Disabled Dealer Magazine

http://www.disableddealer.com/

Classified ads for equipment

United Cerebral Palsy

http://www.ucp.org/

LifeNet's Wheelchair Project

http://www.lifenetswheelchairproject.org

The goal of LifeNet's Wheelchair Project is to put wheelchairs that are not currently being used into the hands of someone who can benefit from them.

Chariots of Hope

http://www.chariotsofhope.org/

Chariots of Hope, a nonprofit organization, has been established for the purpose of collecting used wheelchairs. The donated wheelchairs are then repaired and distributed, at no cost to the recipient, to those in need.

The Darrell Gwynn Foundation Wheelchair Donation Program

http://darrellgwynnfoundation.org/wheelchair-donation-program.htm

Since the organization was formed, the Darrell Gwynn Foundation, in conjunction with its partner Sunrise Medical, has been donating new, power wheelchairs to children and young adults in need across the country. The Foundation receives many requests from people asking for assistance in getting a wheelchair for themselves or a family member who cannot otherwise receive one. The cost of a new chair can be alarmingly expensive and coupled with the other numerous costs associated with spinal cord injuries and debilitating diseases, it can be troublesome to purchase a new wheelchair. On average, a power wheelchair can run approximately $10,000. Unfortunately, insurance does not always cover the expense.

Special Kids Fund

http://www.specialkidsfund.org

Requests for Handicapped Wheelchair Vans and Vehicles - via Email

Please let us know if you are in need of a handicapped adapted vehicle. Contact us via email at Request-Vehicle@SpecialKidsFund.org with;

(1) details of the type of accessible vehicle you are in need of

(2) disability involved

(3) financial need

(4) your location, with Zip Code

(requests by email only; no calls, please)

The Dream Request Program

http://www.thedreamsociety.org/

The Dream Request Program assists people with physical challenges to obtain the necessary equipment to achieve their dream of independence. Here are a few examples of what may be needed:

Back In Action

http://backinaction.njpanda.org/home.php

Welcome to Back In Action, a “classified ads” feature that connects people with available assistive technology (AT)! Back In Action is a project of the Assistive Technology Advocacy Center (ATAC), a program of New Jersey Protection & Advocacy, Inc. (NJP&A). NJP&A is a nonprofit corporation created under the laws of New Jersey.

Disabled Children's Relief Fund (DCRF),

http://www.dcrf.com/

Disabled Children's Relief Fund (DCRF), a non-profit 501(c)(3) organization, provides disabled children with assistance to obtain wheelchairs, orthopedic braces, walkers, lifts, hearing aids, eyeglasses, medical equipment, physical therapy, and surgery. Blind, Deaf, Amputees, and children with Cerebral Palsy, Muscular Dystrophy, Spastic Quadriplegia, Encephalitis, Rheumatoid Arthritis, Spina Bifida, Down's Syndrome, and other disabilities receive assistance. DCRF focuses special attention on helping children throughout the U.S. that do not have adequate health insurance, especially the physically challenged. In some cases, DCRF may be the last resort

Assistance with wheelchair lifts

http://www.ndgw.org/child_found.htm

California Only

Assistance with wheel chair lifts

http://www.ndgw.org/doc/CFApplication.doc

Rehabilitation Equipment Exchange Network

http://www.rehabequipmentexchange.com/index.html

This national network is a FREE service to facilitate the exchange and transfer of used rehabilitation equipment (used rehab equipment). Individuals can use the web site to buy, sell, or donate used rehab items of many types, including wheelchairs, pediatric equipment, mobility aids, ADL aids, communication devices, assistive technology, and exercise equipment.

Special Child Exchange

Group Email Addresses

Related Link: http://www.specialchildexchange.org

Post message: SpecialChildExchange@yahoogroups.com

Subscribe: SpecialChildExchange-subscribe@yahoogroups.com

Unsubscribe: SpecialChildExchange-unsubscribe@yahoogroups.com

List owner: SpecialChildExchange-owner@yahoogroups.com

Medical Expense Grants

The United Healthcare Children's Foundation

http://www.uhccf.org

The United Healthcare Children's Foundation is offering support to meet the needs of children nationwide with assistance grants for medical services not fully covered by health insurance.

Government funded grants to attend disability related Conventions/ Conferences & Seminars

(Many people use these types of grants to attend the annual AMCSI Conferences)

1. Alabama http://acdd.org/

 Consumer Involvement Fund: http://www.acdd.org/content.asp?id=202945

2. Alaska http://www.hss.state.ak.us/gcdse/

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

3. Arizona http://www.azgovernor.gov/DDPC/

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

4. Arkansas - http://www.ddcouncil.org/index.html

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website This doesn’t mean there isn’t such a fund, however this page talks about grants http://www.ddcouncil.org/projects.html So Contact Regina.L.Wilson@arkansas.gov  & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button for further contact info

5. California- http://www.scdd.ca.gov

Info on California’s grant: http://www.scdd.ca.gov/programs_projects/RevisedSponsorshipPolicy2004.pdf

6. Colorado - http://www.coddc.org

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

7. Connecticut - http://www.state.ct.us/ctcdd/

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

8. Delaware - http://ddc.delaware.gov

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button

9. Florida - http://www.fddc.org

Florida’s Grant Fund: http://www.fddc.org/funding/rfp-2010-ip-100 This seems like a very, very lengthy process and requests that applications be submitted six MONTHS prior to conferences. AMCSI’s conference is in six months as of Feb 6th

10. Georgia - http://www.gcdd.org

Georgia’s Grant Fund: http://www.gcdd.org/funding-opportunities/ (scroll down and see “Partnership Fund”)

11. Hawaii - http://www.hiddc.org

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

12. Idaho - http://www.state.id.us/icdd/index.htm

Idaho’s grant fund: http://www.icdd.idaho.gov/applic.aspx#funding

13. Illinois - http://www.dd.illinois.gov

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

14. Indiana - http://www.in.gov/gpcpd

Indiana’s Consumer Investment Fund: http://www.in.gov/gpcpd/2328.htm

15. Iowa - http://idaction.com/

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

16. Kansas - http://www.kcdd.org

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

17. Kentucky -  http://chfs.ky.gov/kcdd/

Kentucky’s Consumer Involvement Fund: http://chfs.ky.gov/kcdd/cif.htm

18. Louisiana - http://www.laddc.org

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

19. Maine http://www.maineddc.org

Maine’s Consumer-Empowerment Fund: http://www.maineddc.org/consumer-empowerment.html

20. Maryland - http://www.md-council.org

Conference Participation Fund: http://www.md-council.org/funding/conference.html

21. Massachusetts - http://www.state.ma.us/mddc

Council Empowerment Fund: http://www.mass.gov/?pageID=afterminal&L=6&L0=Home&L1=Employment,+Equal+Access,+Disability&L2=Disability+Information+and+Resources&L3=Developmental+Disabilities+Information&L4=Citizen+Empowerment&L5=Grants+for+Individuals&sid=Eoaf&b=terminalcontent&f=mddc_empowerment_fund&csid=Eoaf

22. Michigan - http://www.michigan.gov/mdch/0,1607,7-132-2941_4868_4897---,00.html

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

23. Minnesota - http://www.mnddc.org

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

24. Mississippi http://www.cdd.ms.gov/index.html

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

25. Missouri - http://www.mpcdd.com

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

26. Montana http://www.mtcdd.org

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

27. Nebraska - http://www.hhs.state.ne.us/ddplanning/

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

28. New Hampshire - http://www.nhddc.org/index.html

Personal Education and Leadership Development Program: http://www.nhddc.org/smallgrants.html (Scroll to bottom of the page)

29. Nevada - http://www.nevadaddcouncil.org

Consumer Leadership Development Fund:

Guidelines: http://www.nevadaddcouncil.org/pdf/ConsumerLeadershipPolicy.pdf

Application: http://www.nevadaddcouncil.org/pdf/ConsumerLeadershipFundApplication.pdf

30. New Jersey http://www.njddc.org/index.htm

Leadership Training Support Fund: http://www.njcdd.org/Leadership/leadershiphome.htm

31. New Mexico - http://www.nmddc.com

In-State Family and Self-Advocacy Conference Stipends: http://www.nmddpc.com/page/projects-and-rfps (they’ll only help with in-state conferences)

32. New York - http://ddpc.ny.gov/ 

Conference Funding Opportunities: http://ddpc.ny.gov/Pages/conference_funding.html  (they’ll only help with in-state conferences)

33. North Carolina - http://www.nc-ddc.org

Jean Wolf-Rossi Fund for Participant Involvement (Rossi Fund): http://www.nc-ddc.org/services/rossi_fund.html (application at the bottom)

34. North Dakota http://www.ndcpd.org/proj/uapdis/home.html/

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

35. Ohio - http://www.ohio.gov/ddc

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

36. Oklahoma http://www.state.ok.us/~okddc/

Consumer Involvement Fund: http://www.state.ok.us/~okddc/pdf/consumer_involvement_fund_brochure.pdf

37. Oregon - http://www.ocdd.org

Consumer Involvement Fund:

Overview: http://ocdd.org/index.php/ocdd/getinvolved/24/

Application: http://ocdd.org/doc_downloads/CIF_Applications_individuals_rev_11-06.pdf

38. Pennsylvania ‪- http://www.paddc.org

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

39. Rhode Island - http://www.riddc.org 

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

40. South Carolina - http://www.scddc.state.sc.us

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

41. South Dakota - http://www.state.sd.us/dhs/ddc/

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

42. Tennessee - http://www.state.tn.us/cdd/

Consumer Travel Grant: http://www.state.tn.us/cdd/consumertravelgrant.html

43. Texas - http://www.txddc.state.tx.us

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

44. Utah - http://www.gcpd.org

Empowerment Fund: http://utahddc.org/grants/empowerment/index.html (Application to the right side of screen)

45. Vermont - http://www.ahs.state.vt.us/vtddc/ 

Grants up to $500 to Individual & Family Members: http://humanservices.vermont.gov/boards-committees/vtddc/grant-information (click “Grant up to $500” at top of page)

46. Virginia - http://www.vaboard.org

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

47. Washington http://www.ddc.wa.gov/

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

48. West Virginia http://www.wvddc.org 

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

49. Wisconsin- http://www.dhs.wisconsin.gov/programs.htm

There was no specific link to a consumer investment/ empowerment fund listed on this DDC website. This doesn’t mean there isn’t such a fund. Contact the council directly & inquire if they have any available grants to help families & individuals with disabilities attend conferences related to the person’s disability. Click the “Contact US” button.

50. Wyoming - http://ddcouncil.state.wy.us/

Scholarships: http://ddcouncil.state.wy.us/projects.html (go to the bottom of the page and under “scholarships” hit either “Person with Development Disability” or “Family Members”

 

 

Do you have something that has worked great for you or an organization that has helped you and you want to share with others?

Please feel free to post this in our resource or adaptive equipment threads in the forums.

Login: http://www.amcsupport.org/forum then hit this link for the Resource thread http://www.amcsupport.org/forum/viewforum.php?f=6 and this link for the Adaptive Equipment thread http://www.amcsupport.org/forum/viewforum.php?f=43