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GENERAL RESOURCES - NATIONALContents4 Paws for Ability . 3Aaron's Tracheostomy Page . 3Adolescent Health Transition Project . 4AdvoConnection. 4Allsup Medicare Advisor . 4Allsup SSDI . 4Alzheimer’s Association . 4American Association on Health and Disability . 4American Cancer Society . 5Association of Gastrointestinal Motility Disorders, Inc (AGMD) . 5The Arc . 5Aubrey Rose Foundation . 5Baby’s First Test . 5Baby Signs Program . 6Band-Aides & Blackboards . 6Bobby’s Books . 6Bookshare . 6Brave Kids . 6Bridges4Kids . 6Camphill Communities . 7Canine Companions for Independence. 7Care.com . 7Caregiver Action Network . 7CaringBridge . 7Catalyst Center . 7Center for Parent Information & Resources . 8Challenged America Foundation . 8Cody’s Wheels of Hope . 8Compassionate Friends . 8Complex Child e-magazine . 8Coolture . 9Council of Parent Attorneys and Advocates . 9Dakota Medical Foundation . 9Dysautonomia Information Network (DINET) . 9Easter Seals . 9Elk’s Clubs . 10Epilepsy Foundation . 10Exceptional Parent: A Magazine . 10Families USA . 10Family Voices. 10First Hand Foundation . 11Disclaimer:1Inclusion of particular professionals, services, products, or organizations does not imply endorsement byUMDF.UMDF050223
FodSupport.org . 11Genetic Alliance . 11Global Genes . 11Got Transition? . 11GovBenefits.gov. 12Gradient Gives Back Foundation . 12Helping from Heaven, the Lexi Kazian Foundation . 12Hope, Inc. . 12Independent Living USA . 12Insure Kids Now, US Department of Health and Human Services . 13The International Foundation for Optic Nerve Disease . 13Invisible Disabilities Association . 13Jennifer Jaff Center. 13Jonah and the Whale Foundation . 13Kids’ Quest . 13Lighthouse, International . 14Lindsay Foundation. 14Lotsa Helping Hands. 14March of Dimes . 14Matthew Dudgeon Memorial Fund . 14Medicaid . 14Medicaid Appeals Process, published by the Kaiser Family Foundation – A Guide . 15Medicare . 15Michigan State University List of Grants for NonProfits . 15Modest Needs Foundation . 15Mommies of Miracles . 15M.O.R.G.A.N. Project. 16MUMS National Parent-to-Parent Network . 16Muscular Dystrophy Association . 16Muscular Dystrophy Family and Friends Foundation (MDFF) . 16National Association of Hospital Hospitality Houses . 16National Association of Insurance Commissioners (NAIC) . 17National Family Caregivers Association. 17National Hospice and Palliative Care Organization/National Hospice Foundation . 17The National Inclusion Project . 17National Institutes of Health (NIH) Office of Rare Diseases (ORD). 18National Organization for Rare Diseases (NORD) . 18Need Help Paying Bills . 18Newborn Screening resources and sites . 18One Place for Special Needs . 18Organ/Tissue Donations . 18The Oley Foundation . 19Parent Education & Advocacy Leadership Center (PEAL). 20Parent Technical Assistance Center Network . 20Parent to Parent USA . 20Patient Advocate Foundation . 20Disclaimer:Inclusion of particular professionals, services, products, or organizations does not imply endorsement byUMDF.UMDF0502232
PatientsLikeMe . 21R & R Vans & Lifts, Inc . 21Ronald McDonald Houses . 21RonWear. 21SAMI . 22Save the Kid Fund INC . 22ShareNetwork.org . 22Sibling Support Project . 22Songs of Love Foundation . 22Special Needs Alliance . 23Starlight Children’s Foundation . 23Terrell Foundation . 23Think College! . 23Trust It or Trash It . 23United Mitochondrial Disease Foundation (UMDF) . 23United Cerebral Palsy . 24United Cerebral Palsy, One-Stop Resource Guide . 24UnitedHealthcare Children’s Foundation . 24US Department of Labor, Office of Disability Employment Policy . 24Waisman Center . 24We Connect Now . 25Well Spouse Association . 25Wrightslaw . 25Wrightslaw Yellow Pages for Kids. 25Your Patient Advocate. 25GENERAL RESOURCES - NATIONALNote: the following resources are listed in alphabetical order and not by category.4 Paws for AbilityTheir “mission is to place quality service dogs with children with disabilities andveterans who have lost use of limbs or hearing; help with animal rescue, and educatethe public regarding use of service dogs in public places.”Address: 253 Dayton Ave., Xenia, Ohio 45385Email: karen@4pawsforability.orgPhone: 937-374-0385Website: www.4pawsforability.orgAaron's Tracheostomy PageInformation on the nuances of pediatric trach care that may be helpful for manydisabilitiesEmail: tracheostomy@bissells.comDisclaimer:Inclusion of particular professionals, services, products, or organizations does not imply endorsement byUMDF.UMDF0502233
Website: www.tracheostomy.comAdolescent Health Transition ProjectA resource for adolescents with special health care needs, chronic illnesses, physicalor developmental disabilities” as they transition from pediatric to adult health care.Phone: 206-685.-350Website: d patient advocates, health navigators and coaches, care and case managers,insurance navigators, and other professionals in your state. Some may charge a feefor services.Email: info@aphadvocates.orgWebsite: www.advoconnection.comAllsup Medicare AdvisorWhether you’re enrolling for the first time or reconsidering your current Medicare plan,Allsup Medicare Advisor offers personal assistance to help you find the plan thatprovides the coverage you need.Phone: 866-521-7655Website: assistance-forindividuals/medicare-advisorAllsup SSDIProvides free online Social Security Disability Insurance assessment with empower by Allsup and SSDI representation.Website: imer’s AssociationWorks on a global, national and local level to enhance care and support for all thoseaffected by Alzheimer’s and related dementias. Per UMDF regional coordinator,Margaret Moore, they are willing to offer support to patients with dementias related tomitochondrial disease.Phone 800-272-3900 / tdd: 866-403-3073Website: www.alz.orgAmerican Association on Health and DisabilityAAHD is dedicated to the advancement of theory, knowledge and practice in theprevention of secondary disabling conditions and promotion of health and wellness forpeople with disabilities. Among other programs, includes emergency preparednessinformation by state, and college scholarship program.Disclaimer:Inclusion of particular professionals, services, products, or organizations does not imply endorsement byUMDF.UMDF0502234
Phone: 301-545-6140Website: www.aahd.usAmerican Cancer SocietyAt the American Cancer Society, we're on a mission to free the world from cancer.Until we do, we'll be funding and conducting research, sharing expert information,supporting patients, and spreading the word about prevention. All so you can livelonger — and better.Phone: 800-227-2345Website: www.cancer.orgAssociation of Gastrointestinal Motility Disorders, Inc (AGMD)Education, information, and support for patients suffering from digestive motilitydisorders. Includes cyclic vomiting and pseudo-obstruction disorders.Email: digestive.motility@gmail.comPhone: 781-275-1300Website: www.agmd-gimotility.orgThe ArcThe Arc is the world’s largest community based organization of and for people withintellectual and developmental disabilities. Works to include all children and adultswith cognitive, intellectual, and developmental disabilities in every community.Phone: 800-433-5255Website: www.thearc.orgAubrey Rose FoundationOur mission is to help families caring for children with life threatening illnesses withour focus being on the family unit. We strive to lift families from life's complexitiesduring this difficult time by providing emotional and financial support. Helps familieswith financial need because of medical expenses of their children. Offers someeducational scholarships to private high schools in Cincinnati/Northern KY/SoutheastIN areas based on how children have made an impact on the people around them.Email: mnancy@aubreyrose.orgPhone: 513-265-5801Website: www.aubreyrose.orgBaby’s First TestNewborn screening education center for families and providers. This site providesinformation and resources about screening at the local, state, and national levels.Website: www.babysfirsttest.orgDisclaimer:Inclusion of particular professionals, services, products, or organizations does not imply endorsement byUMDF.UMDF0502235
Baby Signs ProgramA program designed for early communication with babies before they can talk. Usessimple gestures to communicate. Programs in various locations and info on theirwebsite.Phone: 916-606-6676Website: www.babysignstoo.comBand-Aides & BlackboardsA site about growing up with medical problems designed and arranged by JoanFleitas, Ed.D., RN of Lehman College. Interactive sections for kids, teens, and adults(including teachers).Website: by’s BooksA program that uses books to help children and adults deal with difficult issues. Usingchildren's literature as a springboard for conversations will give kids the chance toexpress their feelings and tell their own stories.Email: jtaylor@leadingageohio.orgPhone: 614-545-9028Website: www.bobbysbooks.orgBookshareChildren with qualifying disabilities can have free access to over 57,000 talking ebooks.Phone: 650-352-0198Website: www.bookshare.orgBrave KidsDirectory of medical services and resources for children with special needs. Includesspecial lodging information in various locations for families with a hospitalized child.Website: www.bravekids.orgBridges4KidsWhere to find help for a child anywhere in the U. S. Includes state and local agencies,and a variety of programs.Email: info@bridges4kids.orgWebsite: www.bridges4kids.orgDisclaimer:Inclusion of particular professionals, services, products, or organizations does not imply endorsement byUMDF.UMDF0502236
Camphill CommunitiesResidential facilities across North America that include “providing education,advocacy, therapeutic care and other services to support people with disabilities andhelping them participate fully in the world as contributing citizens.”Email: erin@camphill.orgPhone: 484-228-1298Website: www.camphill.orgCanine Companions for IndependenceCCI is a non-profit organization that places service, specialty, signal and soc
Jan 02, 2021 · Allsup Medicare Advisor Whether you’re enrolling for the first time or reconsidering your current Medicare plan, Allsup Medicare Advisor offers personal assistance to help you find the plan that provi
