Links
The following associations and organizations are helpful in providing you additional information for your journey.
CareFlash
www.careflash.com
Free personal websites for patients and families involved in medical circumstances. 3-D animations and related medical links also.
CarePages
Free, personal and private web pages that help family and friends communicate when someone is receiving care.
CaringBridge
Offers free, easy-to-create websites that help connect friends and family when they need it most.
Ronald McDonald House Charities
Many major cities have these facilities where out-of-town families can stay while their children are being treated for a serious illness. Room rates are economical, and a social worker may be able to help locate one.
Songs of Love
www.songsoflove.org
The Songs of Love Foundation is an nonprofit organization dedicated to providing personalized songs for chronically ill children and young adults. These one of a kind compositions are a wonderful source of joy and inspiration to the special people who receive them. Visit their site and request a song for your child today. Just click on the "Request a Song" link, fill out the form, send it in, and within weeks, your child will be able to listen to his/her unique song.
Hope for Families of Children with Cancer
American Cancer Society (ACS)
Dedicated to helping everyone who faces cancer through research, patient services, early detection, treatment, and education. Find information for patients, family.
Association of Cancer Online Resources (ACOR)
Resources, web links, and references for everyone affected by cancer and related disorders.
American Childhood Cancer Organization
Concerned parents of children with cancer, membership over 43,000.
Children’s Cancer Association
CCA is composed of parents, medical professionals, community leaders, and individuals, and provides service to seriously ill children and their families over 22,800 times a year.
CURE Childhood Cancer
Unites the world’s largest childhood cancer research organizations, the Children’s Oncology Group (COG) and the National Childhood Cancer Foundation. Information on support systems and camps across the country.
The Leukemia and Lymphoma Society
Financial assistance and consultation services for referrals to other means of local support. Educational materials for patents and family members through local chapters and the home office.
National Cancer Institute
Provides comprehensive information about diagnoses, statistics, research, clinical trials, and news.
The Neuroblastoma Children’s Cancer Society (NCCS)
Serves as advocates for the children who suffer from neuroblastoma and a support center for their families. Offers the Wall of Fame, educational materials, and more.
The Never Ending Squirrel Tale
This upbeat and encouraging site was started by a Montana woman, Debby Caron, whose friend’s daughter had cancer. The site provides a variety of information for parents of children with cancer as well as resources and communities. The website contains fact sheets, personal stories, spiritual inspiration sections, bulletin boards, scrapbooks, newsletters, articles, practical tips, and links to other resources.
Pediatric Brain Tumor Foundation of the US
Supporting the search for the cause and cure of childhood brain tumors through research. See upcoming events for families & survivors in your area.
The National Children’s Cancer Society
Independent, national organization provides a broad range of services, including financial and in-kind assistance, advocacy, support services, and education and prevention programs.
Pediatric Oncology Resource Center
Resources and information for parents of children with cancer... by parents of children with cancer.
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Hope for Families of Children with Congenital Heart Defects
American Heart Association (AHA)
www.heart.org
The American Heart Association provides material on congenital heart defects, types of medical treatment / testing, a glossary of terms and other helpful information.
The Children’s Heart Foundation (CHF)
www.childrensheartfoundation.org
The Children’s Heart Foundation (CHF) - funds the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects.
Congenital Heart Defects
www.congenitalheartdefects.com
Whether you are looking for definitions of medical terms, hospitals caring for people with CHDs, other people with whom you can network and share experiences, links to support groups, articles regarding CHDs, or resources for the CHD community, you have come to the right place! Congenital Heart Defects website sponsored by Baby's Heart Press.
Hearts of Hope SE Michigan
www.heartsofhopemi.org
Non-profit organization located in the Metro Detroit area. Our mission is to provide support, hope, resources, and networking to families affected by congenital heart defects. We offer parent-matching, on-line support groups, newsletters, and annual events for heart families.
It’s My Heart
www.itsmyheart.org
Its mission is to provide support, spread awareness, educate and advocate for those affected by Acquired and Congenital Heart Defects by creating alliances with fellow families, hospitals, support groups, and the community.
Kids With Heart: National Association for Children’s Heart Disorders
www.kidswithheart.org
Our organization was formed in 1985 with the main mission of providing support, information, and education for the families of the children living with congenital heart defects and to promote public awareness of the issues that these families live with on a day to day basis.
Little Hearts, Inc.
www.LittleHearts.net or www.littlehearts.org
A non-profit organization founded in January 1998. We provide support, resources, networking, and hope to families affected by congenital heart defects. Membership consists of families nationwide who have or are expecting a child with a congenital heart defect.
March of Dimes
www.modimes.com
The March of dimes provides information and much more on all birth defects including congenital heart defects.
Mended Little Hearts
www.mendedlittlehearts.org
Mended Little Hearts, a new support program for parents of children with heart defects and heart disease, is dedicated to inspiring hope in those who care for the littlest heart patients of all. Mended Little Hearts offers resources and a caring support network as families find answers and move forward to find healing and hope.
Helping Hands Healing Hearts
www.riheartgroup.com
Helping Hands Healing Hearts is a support group for RI and Eastern Mass. For families of children with CHD. It is a chapter of Mended Little Hearts.
Saving Little Hearts
www.savinglittlehearts.com
Saving Little Hearts has been helping children with congenital heart defects and their families since 2002. This organization is dedicated to helping children with congenital heart defects and their families by providing financial and emotional assistance and educational information. Saving Little Hearts also strives to provide enriching, educational and fun experiences for these children which will help them build friendships and confidence.
The Congenital Heart Information Network (TCHIN)
www.tchin.org
The Congenital Heart Information Network (TCHIN) – provides reliable CHD information, resources, internet links, as well as support for families, adults, and health professionals.
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Hope for Families of Children on the Autistic Spectrum
Organizations
American Occupational Therapy Association (AOTA)
www.aota.org
Occupational Therapists play a key role in strategies and techniques, helping with social interactions, school performance, and safety.
American Physical Therapy Association (APTA)
www.apta.org
For children, occupational therapists assist in play, school, and daily living, such as the balance of “too much, too little” on swings, climbing apparatus and unstable surfaces as children learn to adapt. Sensory Integration is active, not passive. The child does it and sees the results. They are problem solving, with the therapistbeing a guide and observer.
American Speech-Language-Hearing Association (ASHA)
www.asha.org
This organization is the professional association for 140,000 audiologists, speech-language pathologists, and speech, language, and hearing scientists.
Autism Society of America
www.autism-society.org
This site offers a wealth of information, including a directory of local chapters, current research and e-newsletters, programs and support, daily tips, and even a list of sensory friendly films.
Autism Speaks
www.autismspeaks.org
The Autism Speaks site disseminates information about legislation that relates to autism and how to become involved on the local level. Autism Speaks is the nation’s largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.
Families for Early Autism Treatment (FEAT)
www.feat.org
FEAT is a nonprofit organization of parents, educators, and other professionals dedicated to providing world-class education, advocacy, and support for the family.
National Autism Association
www.NationalAutismAssociation.org
The mission of the National Autism Association is to respond to the most urgent needs of the autism community, providing real help and hope so that all affected can reach their full potential. This is a resource of many helpful links.
Sociable Kidz
www.sociablekidz.com
Sociable Kidz is a social skills group for kids from preschool (age four) through eighth grade taught by two classroom teachers. Their mission is to take practical daily techniques used in classrooms and use them in Sociable Kidz sessions. They are constantly working on improving children’s self-esteem. They focus daily on problem-solving strategies, as well as teaching kids how to make friends, how to make eye contact, and how to share.
Websites/Blogs
Autism Support Network
www.AutismSupportNetwork.com
Thousands of families share what works, coping strategies, and life guides on their daily journey.
The Autistic Touch
www.theautistictouch.com
This blog by Mary Donachy is about life with her granddaughter, Jenny
Colleen Swindoll Thompson Blog
www.insightforliving.typepad.com/specialneeds
Colleen Swindoll Thompson is the daughter of Chuck Swindoll and has a wonderful blog for special-needs families. She has an autistic son.
Emily Colson Blog
www.emilycolson.com
Emily Colson is the daughter of Chuck Colson. She is an artist and writer. After many years as an art and creative director in the field of advertising and design, she now pours her creative gifts into helping her son, Max, who is diagnosed with autism. She has even pioneered an innovative communication system to assist her son. Emily has been a single mother for most of Max’s twenty years, with hard-fought lessons of life, love, and laughter. Emily has a terrific blog on her website, and has written a book, Dancing with Max.
Joni and Friends
www.joniandfriends.org
Joni and Friends reaches out to special needs families. The website contains information and DVD on autism and church.
MOM—NOS(Mom—not otherwise specified)
www.momnos.blogspot.com
Written by a mom who helps the rest of us “get it.” Her blog on 3/13/10 is so helpful in appreciating the same-and-different brains of typical and ASD people. It was given to her child’s fourth grade class, but helps adults too. It’s called, “On being a hair-dryer kid in a toaster world.”
SibNet
www.siblingsupport.org
SibNet is a website for siblings of special needs persons.
Tim Tucker Blog
www.bothhandsandaflashlight.com
Tim Tucker writes Both Hands and a Flashlight, a blog for parents whose children are or may be on the autism spectrum. “We believe there’s nothing ‘wrong’ with any of our children. They are just striving to overcome many challenges, and they are perfect just as they are. This is a ‘come-as-you-are’ kind of blog, where the spectrum of emotions is welcome. We aren’t super-parents; we’re human. We believe the pursuit of becoming the best parents we can is what matters. We believe in the adventure. We believe in never giving up. We believe in advocating fiercely for our children. And first and foremost, we believe in them.”
Government Resources
The CDC’s Autism Information Center
www.cdc.gov/ncbddd/autism
This site informs about CDC and congressional activity; resources for families, educators, and practitioners; publications and databases.
National Institute of Mental Health
www.nimh.nih.gov/health/topics/autism-spectrum-disorders-pervasive-developmental-disorders/index.shtml
NIMH offers science news, ASD publications, MIH activities, and more.
US Department of Health & Human Services
www.acf.hhs.gov/programs/add
DHHS provides original documentation of government programs and findings. Entering the keyword “autism” in the search function for this site will result in numerous links to autism-related topics on the site.
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