Archives for October 15, 2011

In October of 2011, I release my latest document called “10 Helpful Tips for BAHA Wearers” with members of our support group, medical professionals and additional support groups and helpful resources.  This document received an overwhelming response by the community.  I received numerous e-mails from audiologists, surgeons, medical professionals such as therapists and staff from early intervention programs, hearing loss associations, and schools for the deaf and blind.  I had many medical professionals and therapists ask if they could publish this document in their organization’s news letters and hand out to their patients.  The main goal for this document was to provide some helpful information on sound processors, hearing loss, and bone conduction technology in general along with providing some tips on how to wear sound processors more easily and how to get the most out of your sound processor.  Thank you to everyone in every field of medicine and in children’s healthcare who enjoyed reading this document and found it educationally helpful.  Also, thank you to everyone for taking my thoughts and passion for wanting to help others learn more in the community seriously.  I believe in advocacy whether it is self, parent or patient advocacy.  The power to know all of your options is invaluable.  Thank you for supporting a parent advocate…thank you for supporting me.

Also, in October of 2011, I have a meeting with Oticon Medical’s US Subsidiary Manager/President for the US.  After a full day of discussing Microtia and Atresia and how to help promote awareness, Oticon’s president asked me what can Oticon do to help me with our support group.  Along with a few other ideas, I explain I would like to help bring Microtia/Atresia families together.  I explain how many children and adults with M/A (including Hemifacial Microsomia, Treacher Collins, and Goldenhar Syndrome) have never met another person in the same situation.  Sometimes, the kids are bullied or picked on along the way in school.  So, I brought up the idea of hosting “global” picnics through our support group and Oticon loved the idea.  So, I am thrilled to know that Oticon is pleased to help our support group bring families together and help present “all” options to everyone so that everyone can make the best decisions.  From this moment on, my planning began for the picnics.  I selected hosts in each state from our support group to help other families share in the opportunity to bring families together in their own states and enjoy a rewarding experience of helping promote awareness about Microtia and Atresia as a community.  States selected for picnics the summer of 2012 are:  California, Colorado, Texas, New York, and New Jersey, including Toronto and Calgary in Canada.  I want everyone to know that although these states have been selected, I personally, even with support, just can not make it to everyone in one summer.  The goal is to hopefully rotate through states and countries every year for these family picnics.  Thank you so much Oticon for wanting to support my efforts for the Microtia and Atresia Support Group members and for supporting me as a parent advocate trying to make a difference and help everyone who has Microtia and Atresia realize that they are not alone and never will be with our support groups and community events.  Thank you!

During the month of October in 2011, I receive news from Facebook that our group’s discussion area will be removed as they will be removing the “discussions” application on all groups and pages.  Unfortunately, this is the area of our support group that holds the heart of our group’s information and resources.  At this point, I begin diligently working on building our new website (which I had been wanting to do for the past year but had not been able to find the time to get to it).