On December 21, 2011, I received an e-mail from Dr. Greg O’Toole of the UK (world renown Rib Graft surgeon) sharing some information with me including a video of one of his patients, named Ethan, who was born with Microtia.  Thank you Dr. O’Toole for your kind message and for embracing our global support group.  Thank you!

On November 20, 2011, our support group turned 1.5 years old!  When founded on May 20, 2010 I was our group’s first member.  Since then, we have grown to have over 2,500 global members (including anonymous members) total.  According to our support group’s Facebook statistics, we have had nearly 1 million post views in the past 1.5 yar period alone and have members belonging from over 45 countries.

In November of 2011, I was invited to a meeting with marketing at Cochlear to discuss how Cochlear could help our support group.  We discussed the global picnics and we also discussed the launch of the new website.  Cochlear is excited to help our support group bring families together at our picnics too.  It was a very nice meeting and I appreciate Cochlear also wanting to help promote awareness about Microtia and Atresia through our picnics.  Thank you for supporting our support group and its members and for being there for all of us in trying to help bring all of us together so we can share experiences.  Thank you!

In November, I also had a very nice phone call with Sophono discussing our group’s summer picnics and Sophono is thrilled to participate.  Thank you Sophono for helping me bring families together and learn about “all” of their options. 

During the month of October, 2011, our support group hosts its 2nd Annual Secret Santa Gift Exchange.  In 2011, our Secret Santa Gift Exchange became a global gift exchange.   Our group also continues to become more and more global everyday helping families and medical professionals around the world.

On October, 26 2011, a group and I met with Donna Sorkin, Vice President of Consumer Affairs for Cochlear, George Cire (renown audiologist and BAHA expert), and Tara Oneill (insurance specialist for the rocky mountain region).  Other members of the group at the meeting that night included Dr. Cheryl Johnson (one of Colorado’s top audiologists), Lyn Bopp (guide by your side representative for the Hands & Voices Organization) and Debbie Mohney (Coordinator for Colorado for the Hearing Loss Association) including a family with a child who has Microtia/Atresia and wears a BAHA among other members representing Cochlear and insurance specialists.  The goal behind this meeting is to try and help get Colorado Medicaid coverage for BAHAs.  Currently, Colorado as a state is not recognized through Medicaid services to cover BAHA products for infants to age five.  More meetings will be scheduled with attorneys and Medicaid personnel in hopes of establishing Medicaid coverage for the BAHA and younger children who have a unilateral/bilateral hearing loss.

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).

On September 22, 2011 I had the opportunity to meet Dr. Brad Kesser and Dr. Burt Brent in person in between their scheduled presentations.  I have to say that was such an honor for me to have met them.  Both Dr. Brent and Dr. Kesser took the time to spend an hour with me and met my girls.  They both answered many of my questions.  Thank you for taking the time to meet with me in Denver!

On September 25, 2011 I attended the American Society for Plastic Surgeons Conference that was held in Denver, Colorado.  Dr. John Reinisch was so very kind to register me for the show.  I had the opportunity to spend half of the day with Dr. Reinisch at the conference where he helped me learn more about the Medpor surgical technique.  In exchange, I introduced him to some of my marketing colleagues who were at the show as well.  I was honored to have been invited to attend a panel discussion between Dr. Burt Brent, Dr. Francoise Firmin, Dr. John Reinisch, and Dr. Chalres Thorne on the “Controversies of Ear Reconstruction.”  This panel discussion was not open to the public and was invaluable for me.  It was also quite the honor to be in the same room with Dr. Brent, Dr. Firmin, Dr. Reinisch, and Dr. Thorne.  Dr. Nagata was also scheduled to speak, but was not available to be at the conference. Thank you so much for thinking of me Dr. Reinisch and for registering me for the conference.

Later that night, some members of our support group met with me and had a business dinner with Dr. Russell Griffiths who is a highly reputable plastic surgeon from Boise, Idaho practicing both Rib Graft and Medpor surgical techniques in one stage each.  Dr. Griffiths was very nice to take the time to help answer many of our questions.  Thank you so much Dr. Griffiths for being available for our group that night!

It was a wonderful learning experience to be able meet all of these world renown surgeons in person, but to be able to get the facts straight from them for our support group.  They all love our support group too and embrace it!  Below are some photos from the conference that week:

In September, I receive a phone call from Agata Gelaberto of Regenear.  We have a very nice 45 minute conversation about Regenear, a company that Agata and her husband have started in Spain that focuses on the biomedical engineering of ear cartilage for individuals with Microtia.  Agata’s daughter has Microtia and has been diligently working toward regenerating ear cartilage for her own daughter and individuals who have Microtia.  Agata knows about our group and was excited to reach out to me and discuss the future and Regenear.