Microtia & Atresia: Additional Information Sources

The House Research Institute
There is a wonderful non-profit organization in California that can help answer many of your questions regarding hearing loss, including facts about Microtia and Atresia and where to begin. The House Research Institute can help you regarding finding answers to Microtia, Atresia, hearing issues, where to begin, which specialists to go to, and so much more…please contact The House Research Institute in California. The House Research Institute was founded by Howard P. House, M.D., who founded the Institution in 1946 as a private non-profit hearing research and educational facility. Since its inception, the Institute has grown from a rented one-person office to a five story building with 180 staff members. This organization has helped children, families and individuals understand more about hearing loss world wide. House Research Institute (formerly House Ear Institute) continues to be a leader in defining the causes of hearing and balance disorders and improving sensory devices and diagnostic technologies. Over the course of our history, our discoveries have led to improved treatments and care for millions of people around the world.

For more information, please click on the following link:
www.hei.org

There is also a sister organization to the House Research Institute called CARE that helps specifically with children’s hearing. The House Research Institute is also the same organization that rock start Paul Stanley has worked with in the past in promoting hearing awareness and how to protect your hearing.

Contact information for the House Research Institute:
Formerly House Ear Institute
2100 W. 3rd Street
Los Angeles, CA 90057 USA

Telephone:
(800) 388-8612
(213) 483-4431 – Local
(213) 484-2642 – TDD
(213) 483-8789 – Fax

Child Find Idea Organization
(birth to age three)
Do you think your child is experiencing some delay in their speech and communication skills due to a hearing loss and/or including their physical strength “low tone”? Contact Child Find (Child Find Project) – an early intervention program, http://www.childfindidea.org/ Child Find can help put you in touch with the correct state early intervention program you need for your child. Each early intervention program has separate state funding and operates as a separate city/county branch although functioning as one throughout each state.

Birth 2 3
Birth 2 3 is another early intervention program similar to Child Find. For more information on Birth To Three, please visit: http://www.birth23.org/ or call: 800-505-7000. From birth to age three children have a lot to learn…
…but not all children are learning as well as they can. Every child deserves a good start in life. The mission of the Birth to Three System is to strengthen the capacity of families to meet the developmental and health-related needs of their infants and toddlers who have delays or disabilities.

Parent 2 Parent Organization
A wonderful Non-Profit Organization called Parent to Parent offers helpful resources and a way for families to connect with one another, especially when seeking information about their children or loved ones with disabilities that you or your child may have.
Parent 2 Parent offers encouragement to each other on the journey of parenting our sons and daughters with disabilities or special health care needs. We do this by providing emotional and informational support, resources and by matching parents seeking support with a support parent.
Please visit http://www.p2p-co.org/
Para mas información sobre Padre a Padre de Colorado
llame al 1-877-472-7201.

Parent 2 Parent National Organization (USA)
For more information, please visit our website at http://www.p2pusa.org/

Mums National Parent 2 Parent Network
http://www.netnet.net/mums/

Hands & Voices Organization
Hands & Voices is dedicated to supporting families with children who are Deaf or Hard of Hearing without a bias around communication modes or methodology. We’re a parent-driven, non-profit organization providing families with the resources, networks, and information they need to improve communication access and educational outcomes for their children. Our outreach activities, parent/professional collaboration, and advocacy efforts are focused on enabling Deaf and Hard-of-Hearing children to reach their highest potential.
PO Box 3093
Boulder CO 80307
Ph: (303) 492-6283
Toll Free: (866) 422-0422
http://www.handsandvoices.org/

PEAK Parent Center
If you live in Colorado, below is a link that will take you to a very helpful website full of resources. PEAK Parent Center is Colorado’s federally designated Parent Training and Information Center (PTI). PEAK assists families and others through services like its telephone hotline, workshops, conferences, website, and publications. As a PTI, PEAK offers parent-to-parent support, but it does not hold support group meetings. We work one-on-one with families and also collaborate with state government and the education, rehabilitation, and medical communities to make system changes that improve outcomes for children.
Our Mission
The mission of PEAK Parent Center is to provide training, information and technical assistance to equip families of children birth through twenty-six including all disability conditions with strategies to advocate successfully for their children. As a result of PEAK’s services to families and professionals, children and adults with disabilities will live rich, active lives participating as full members of their schools and communities.

PEAK’s main office, which serves the entire state, is located in Colorado Springs. Our Denver Outreach Project serves Denver families who have traditionally been underserved, have low incomes, have limited English proficiency, or have disabilities themselves. Eight Regional Mentors extend PEAK’s outreach efforts across Colorado.
Because of our expertise, PEAK also has been selected to provide technical assistance and support to the Parent Training and Information Centers in 10 other states including: Arizona, Colorado, Kansas, Montana, Nebraska, New Mexico, North Dakota, South Dakota, Utah, and Wyoming.

Who should contact PEAK Parent Center?
* Families of children with disabilities
* Friends of children with disabilities
* Individuals with disabilities
* Professionals in education, medical, and human service fields
* Individuals who wish to contract with PEAK for consultation, customized in-service trainings, curriculum development, in-service presentations and workshops on a fee-for-service basis

Is there a cost for PEAK Parent Center services?
* Many of PEAK services are provided at no cost to parents and families
* PEAK also provides consultation, customized in-service trainings, and project evaluation services to community groups and school districts on a fee-for-service basis
https://www.peakparent.org

AmeriFace Organization
Attn:  Debbie Oliver
Post Office Box 751112
Las Vegas, NV 89136
24-Hour Toll-free Hotline:  (888) 486-1209
Phone:  (702) 769-9264
Fax:  (702) 341-5351
E-mail:  info@ameriface.org
http://www.ameriface.org/about.html

The Itinerant Connection
The below link is to an awesome site that I just found out about through my daughter’s speech therapist. There is a website called “The Itinerant” and it covers pretty much everything from student’s rights, hearing aids, early intervention, sign language, and so much more!
http://www.theitinerantconnection.com/

AudiologyOnline
19141 Stone Oak Parkway Suite #104
San Antonio, TX  78258
800-753-2160 voice
210-615-6831 voice (for callers outside of US)
210-615-6832 fax
http://www.audiologyonline.com/

Educational Audiology Association
3030 West 81st Avenue
Westminster, Colorado 80031
Ph:  800-460-7322
admin@eduad.org
http://www.edaud.org/

California Ear Institute
1900 University Avenue
Suite 101
E. Palo Alto, CA 94303
Phone: (650) 494-1000
Fax: (650) 322-8228
http://www.atresiarepair.com/

University of Virginia School of Medicine
Atresia
BOX 800713
Charlottesville, VA 22908
Ph: 434-924-2040
http://www.medicine.virginia.edu/clinical/departments/otolaryngology/atresia/home-page

Additional Helpful Resources:

School District Information
For a school district nearest to you, contact your city/county building and ask for the school district phone number for your child.

Area Public Health Department Information
For additional health services, contact your city’s health department

List Serve Information
For additional contact information regarding diseases, syndromes, disorders, etc…
Below are just some of these helpful information services (some of them are for Colorado, but also have national contact information):

P2P: Parent to Parent of Colorado, p2p-co.org, 877-472-7201
PEAK Parent Center, peakparent.org, 800-284-0251
PEP: Parents Encouraging Parents, www.cde.state.co.us/cdesped/PEP.asp, 303-866-6846
Autism Society of Colorado, autismcolorado.org, 720-214-0794 or 866-733-0794
Brain Injury Association of Colorado, biacolorado.org, 800-955-2443
Brain Injury Association of America, biausa.org, 800-444-6443
Cerebral Palsy of Colorado, cpco.org, 303-691-9339
Cerebral Palsy Association of Colorado Springs, cpappr.org, 719-638-0808
United Cerebral Palsy, ucp.org, 800-872-5827
The XXYY Project, xxyysyndrome.org, 303-400-3456
Chromosome Deletion Outreach, chromodisorder.org/CDO, 561-395-4252
National Fragile X Foundation, fragilex.org, 800-688-8765
Mile High Down Syndrome Association, mhdsa.org, 303-797-1699
National Down Syndrome Congress, ndsccenter.org, 800-232-6372
Epilepsy Foundation of Colorado, epilepsycolorado.org, 303-377-9774 or 888-378-9779
Epilepsy Foundation, epilepsyfoundation.org, 800-332-1000
NOFAS Colorado, nofascolorado.org, 303-692-2620
National Organization on Fetal Alcohol Syndrome, nofas.org, 800-666-6327
American Council of the Blind of Colorado, acbco.org, 888-775-2221
Infantile Scoliosis Outreach Program (ISOP), infantilescoliosis.org, 303-691-9339 or 866-417-4873
Learning Disability Association of Colorado, ldacolorado.com, 303-894-0992
Rocky Mountain Branch of International Dyslexia Association, dyslexia-rmbida.org, 303-721-9425
International Dyslexia Association, interdys.org, 410-296-0232
LD Online, ldonline.org
National Center for Learning Disabilities, ncld.org, 888-575-7373
Mental Health America of Colorado, mhacolorado.org, 800-456-3249
National Alliance for the Mentally Ill, Colorado, namicolorado.org, 888-566-6264
Child and Adolescent Bipolar Foundation, bpkids.org, 847-492-8519
Depression and Bipolar Support Alliance, dbsalliance.org, 800-826-3632
Spina Bifida Association of Colorado, coloradospinabifida.org, 303-797-7870
Tourette Syndrome Association Rocky Mountain Region, tsarmr@att.net, 720-212-7535
Tourette Syndrome Association, tsa-usa.org, 718-224-2999
* For information on additional specific disabilities, we recommend:
CHADD (Children & Adults w/ Attention Deficit/Hyperactivity Disorder), chadd.org, 800-233-4050
Muscular Dystrophy Parent Project, parentdmd.org, 800-714-5437
Parents of Premature Babies, preemie-l.org
Sensory Processing Disorder Foundation, spdfoundation.net, 303-794-1182
For general information on disabilities from national organizations, we recommend:
MUMS National Parent-to-Parent Network, netnet.net/mums, 877-336-5333
National Dissemination Center for Children with Disabilities (NICHCY), 800-695-0285
National Organization for Rare Disorders (NORD), rarediseases.org, 800-999-6673 (voicemail only)

For information on additional specific disabilities, we recommend:
CHADD (Children & Adults w/ Attention Deficit/Hyperactivity Disorder), chadd.org, 800-233-4050
Muscular Dystrophy Parent Project, parentdmd.org, 800-714-5437
Sensory Processing Disorder Foundation, spdfoundation.net, 303-794-1182

For general information on disabilities from national organizations, we recommend:
MUMS National Parent-to-Parent Network, www.netnet.net/mums, 877-336-5333
National Dissemination Center for Children with Disabilities (NICHCY), nichcy.org, 800-695-0285
National Organization for Rare Disorders (NORD), rarediseases.org, 800-999-6673 (voicemail only)

Global On Line Microtia Support Groups

Ear Community
A global 501c3 nonprofit organization for Microtia and Atresia
http://www.EarCommunity.org

The Microtia and Atresia Support Group on Facebook
https://www.facebook.com/pages/Microtia-and-Atresia-Support-Group/118851728152174?fref=ts

Microtia Group on Facebook
https://www.facebook.com/groups/31891836988/?ref=ts&fref=ts

Microtia Group on Facebook
https://www.facebook.com/pages/Microtia/112128455465106

Microtia Argentina on Facebook
https://www.facebook.com/MicrotiaArgentina

Microtia Indonesia on Facebook
https://www.facebook.com/groups/microtiaindonesia/?ref=ts&fref=ts

Microtia Peru on Facebook
https://www.facebook.com/microtia.peru

Microtia Chile on Facebook
https://www.facebook.com/microtia.chile

Online Goldenhar Syndrome UK Support Group
http://www.goldenhar.org.uk/

Microtia Mingle UK on Facebook
https://www.facebook.com/groups/123265151064942/?ref=ts&fref=ts

Microtia Mingle UK (website)
http://www.microtiamingle.co.uk/

Microtia and Atresia UK on Facebook
https://www.facebook.com/pages/Microtia-and-Atresia-UK/272563969466974

Microtia and Atresia Support for South Africa
https://www.facebook.com/groups/43424307947/

Microtia Mexico Community
https://www.facebook.com/pages/Microtia-Mexico/202437193109718?ref=ts

Microtia Mexico Group
https://www.facebook.com/groups/149852275040126/

Microtia Columbia Group
https://www.facebook.com/pages/Microtia-Colombia/173961102667257

Microtia Spain Group
https://www.facebook.com/groups/328318510561567/

Microtia Russia on Facebook
http://vk.com/groups.php?act=s&gid=34638647

Global Online Atresia/Microtia Group on Yahoo
Please e-mail at: AtresiaMicrotia@YahooGroups.com

Australian Online Global Microtia Support Group on Yahoo
Please e-mail at: MicrotiaAustralia@YahooGroups.com

• Search for other global groups that may be focused on your country through Yahoo

Mothers With Special Needs Children (on Facebook)
The below link is to a group that I just found. It is a global group and is called Mothers With Special Needs Children. It is very heart warming and is a wonderful group that was created by a mother who also had a child born with Microtia and just felt lost and didn’t know what to do or who to talk to for support.
https://www.facebook.com/Mothers-with-special-needs-children-41292941110/

The National Deaf Children’s Society (NDCS) is the leading charity dedicated to creating a world without barriers for deaf children and young people. http://www.ndcs.org.uk/

Aussie Deaf Kids Organization
http://www.aussiedeafkids.org.au/a-child-with-microtia-and-atresia.html

Great Ormand Street Hospital for Children
A wonderful website that helps youth. http://www.gosh.nhs.uk/teenagers/

Global BAHA/Conductive Hearing Device Support Groups

BAHA World Hearing on Facebook
https://www.facebook.com/groups/BahaWorld/

BAHA Support Group for Southern Africa on Facebook
https://www.facebook.com/groups/43424307947/

BAHA – Bone Anchored Hearing Aids on Facebook
https://www.facebook.com/groups/6763971506

Bone Anchored Hearing Aids on Facebook (UK)
https://www.facebook.com/groups/BAHA.UK/?ref=ts&fref=ts

Online Global BAHA Group on Yahoo 
Please e-mail at: BAHA_PPL@YahooGroups.com

Online Global Unilateral Hearing Loss Group on Yahoo
(created by the Hands & Voices Organization)
http://groups.yahoo.com/group/HandsandVoices_UnilateralHearingLoss