Patient 
  Advocacy 
  Council

The Friends of NIDCR Patient Advocacy Council is comprised of non-profit organizations who work together to 1) support oral health research and NIDCR and 2) transfer oral health research from bench to bedside. 

At the end of the day, research is conducted to improve the health and lives of others. Below are quotes, stories, photos and videos that demonstrate the impact the Patient Advocacy Council has on the lives of many.

The FNIDCR PAC is co-chaired by Kathy Hammitt and Mary Fete.

View all the current members of the Patient Advocacy Council.

  

 

Ear Community Organization

www.EarCommunity.org
@EarCommunityOrg
 Microtia and Atresia Support Group
 earcommunity
#EarCommunity #MicrotiaAwarenessDay

November 9, 2018 is National Microtia Awareness Day! Learn more and help encourage education and public awareness about Microtia, missing or underdeveloped ears, and Atresia, underdeveloped ear canals resulting in hearing loss. Look out for the hashtags #EarCommunity and #MicrotiaAwarenessDay online.

Ear Community is a 501(c)(3) nonprofit organization that offers a warm and supportive community for individuals who were born with Microtia and Atresia, Hemifacial Microsomia, Goldenhar Syndrome  and Treacher Collins Syndrome, including varying degrees of hearing loss.

After founding the "Microtia and Atresia Support Group" on Facebook in 2010, the support group became a nonprofit organization in early 2012 with the new name of Ear Community. Ear Community is the first parent-driven nonprofit organization to help children and adults who have Microtia and Atresia.

Since 2012, Ear Community has given back to the Microtia and Atresia community in many ways. Ear Community has:

  • Donated nearly 100 new bone conduction hearing devices to needy children and adults who have Microtia and Atresia.
  • Awarded over 10 college scholarships and a variety of grants to help bring the community together.
  • Hosted over 50 educational family events all over the world, bringing thousands of people together.
  • Presented in front of the FDA and are currently on a grant for genetic research with Harvard and MIT.
  • Established National Microtia Awareness Day which takes place every year on November 9 to help raise awareness.

What is Microtia and What is Atresia?

Microtia is a congenital deformity affecting the outer ear (pinna) where the ear does not fully develop during the first trimester of pregnancy. A Microtia ear is often smaller in size, can have a peanut shaped appearance, only have a small nub or lobe present or be completely absent at birth. Microtia is Latin for the words micro and otia, meaning “little ear.” Microtia can affect one ear (unilaterally) or both ears (bilaterally). Microtia occurs in every 1 out of 6,000 to 12,000 births. The right ear is more commonly affected. Microtia is often accompanied by Atresia.

Atresia, also known as aural atresia, is the absence or closure of the external auditory ear canal. The malformation of the middle ear bones (incus, stapes, and malleus) may be affected including the narrowing of the ear canal, known as canal stenosis. Atresia is Latin for absence of an opening.

For more information visit: earcommunity.org/microtiaatresia or contact Melissa Tumblin, Ear Community Founder and Executive Director.