In September of 2011, I receive an e-mail from Dr. Cheryl Johnson (one of Colorado’s leading audiologists) letting me know that at an audiology conference she attended in California, Dr. Sheryl Lewin mentioned our support group as a helpful resource and touched on how open, warm and unbiased our group is.

On August 28, 2011 I share a comparative review on the three BAHA styles that Ally was able to trial.  This comparative review not only discussed the Cochlear BP100/BAHA3, Oticon Medical Ponto Pro, and Sophono Alpha 1 (S) all on a soft band, but I touch on hearing loss and discuss audiograms/hearing evaluations and the speech banana.  Over the course of the next couple of months, I receive e-mails from audiologists, staff from schools for the deaf and blind, and therapists from early intervention services and human services asking if they can pass along my comparative review.  Some professionals asked me if they could have my permission to print the review in newsletters.  Dr. Sheryl Lewin even asked if she could translate it into Spanish for Spanish speaking families.

During the weekend of August 27th, 2011, Oticon invited my family to attend their 1st Patient Advocacy Conference in Chicago, Illinois.  During this conference, my family and I learned more about the Ponto series sound processors and bone conduction technology.  We were also given the opportunity to meet with 10 other families who all wear sound processors due to experiencing mixed hearing loss, sensorinerual hearing loss, or conductive hearing loss.  The impact of everyone’s stories was very emotional and rewarding at the same time.  We learned how each one of us is affected by a hearing loss.  One very special highlight for my family personally was to have met Justin who also has Microtia and Atresia and he had never met anyone before with M/A.  It was so nice to have him hold our Ally and to meet her so he could realize he is not alone with M/A.  Thank you Oticon Medical for thinking of my family and for embracing the Microtia and Atresia Support Group.  Thank you for inviting us to be a part of your 1st Patient Advocacy Conference in 2011.

Below are some photos from the conference:

In August of 2011, I receive a handful of e-mails from Denver Public Health and TriCounty Health Departments asking me if they can pass along my group’s information to families with Microtia and Atresia and to have their staff/personnel note our support group as a helpful resource for the deaf and hard of hearing.  I receive an e-mail from the Parent 2 Parent organization asking to add our support group to the national list serve list (where there are contacts for autism, cancer, diabetes, etc…). 

In June of 2011, I contacted the House Research Institute and had a very nice phone conversation with their education director.  As of June, 2011, the House Research Institute agreed to add a link for our support group as a helpful resource on their website.

In June, Dr. Brad Kesser asks if our support group would run a survey through to group members about unilateral Atresia in children growing up and their experience in the school classroom. 

For three months I planned for our summer picnic.  I drove around to at least thirteen grocery stores with Ally (when I found the time to do so) and information on letterhead about our support group asking for donations for our picnic.  I was determined to bring Microtia and Atresia families together no matter what…even if we all brought our own food and did a pot luck.  To my surprise, many of the grocery stores were all very giving and happy to give a donation to our support group picnic.  Walmart, KingSoopers, Costco, and Safeway….thank you all for giving.  Because of you…I knew our picnic was well on its way and was going to be a wonderful event!

In May, another wonderful surprise happened…Oticon Medical asked me if they could please sponsor our summer picnic.  I couldn’t believe it!  I was so happy and was practically crying tears of joy in between my e-mails back and forth to the Vice President of Marketing as he shared his excitement with me in planning for the picnic.  Oticon Medical offered to sponsor our group’s deli lunch.  Oticon even provided hats (visors) for everyone at the picnic with our support group’s name on them.  Then, the day before our picnic, I received a phone call while standing in line at Costco picking up the sheet cakes and bottled water for the picnic.  Cochlear was on the phone and said they would be like to be at our picnic and asked if we had any fun entertainment for the kids.  Before I knew it, we now had a face painter.  Again, I was so happy…our picnic was coming together and was getting better and better!

On June 10, 2011, the night before our picnic, I received a phone call from Dr. Arturo Bonilla, Founder of the Microtia Congenital Ear Deformity Institute in San Antonio, TX (world renown Rib Graft surgeon).  Dr. Bonilla called to tell me that he would like to attend our picnic the following morning.  I can not tell you how honored I was to know that Dr. Bonilla wanted to take the time to fly out to attend our picnic and that he wanted to be there for our support group’s families.  I quickly realized that Dr. Bonilla was doing this to support me too and my efforts toward promoting awareness about Microtia and Atresia.  Thank you so much Dr. Bonilla.  I will always remember your generosity and thoughtfulness in being there for all of us that Saturday at our 1st Annual picnic.  Thank you!

On Saturday, June 11th in Denver, CO, I hosted our support group’s very first annual summer picnic for Microtia and Atresia families.  Of course it rained and the park was muddy.  The bathrooms were not the best either, but everyone who attended had a wonderful time.  The kids enjoyed getting their faces painted.  Our lunch was amazing and delicious.  There were tons of smiles on everyone’s faces.  I was touched to see so many families and individuals attend our picnic.  What was even more touching was knowing that many who attended were so happy to finally meet other Microtia and Atresia families just like them!   Everyone was there…we had two beautiful little girls who had Treacher Collins at our picnic and a couple of Goldenhar families.  We a few adults attend including one adult (Scott) who was one week post op from having Medpor surgery.   Scott was so excited to answer questions about his surgery and to be at our picnic with everyone as he had only met a couple of other individuals over his lifetime who had Microtia/Atresia.  Everyone enjoyed mingling and getting the chance to talk to everyone and share experiences.  We had a literature table that had helpful brochures about BAHAs from Oticon, Cochlear, and Sophono including copies of both of my articles that I had recently published.  As Dr. Bonilla spoke with families, representatives from Oticon, Cochlear, and Sophono also mingled helping answer questions about sound processors and hearing loss.  We had a perfect mix of individuals of all different ages…some with BAHAs, some who have had surgery and some who like their little ears just the way they are.  Our fire truck even showed up for the kids at the very end of our picnic as it began to rain again.  All in all, it was a perfect day as far as I am concerned and one that I will never forget.  A little over 100 people attended our 1st picnic.  Thank you everyone for wanting to meet each other and for wanting to come together and share experiences.  Our picnic would not have been so successful with all of you there.  I am looking forward to seeing you all and many more of you each summer!

Below are some photos from our 1st Annual Summer Picnic for Microtia and Atresia Families in Denver, Colorado (USA) from June 11, 2011.

Thank you to Oticon, Cochlear ad Sophono for helping me bring families together.  Thank you most of all to the families and individuals who want to come together.  None of this would have been possible or have happened without all of you caring and wanting to come together.

In April, I was contacted by Chicago Hands & Voices along with one of our support group members and asked to be on a conference call with families who have children with Microtia and Atresia.  Our conference call took place on April 18, 2011 and lasted for an hour and a half.  I am always happy to help!

On February 2, 2011, I contact Oticon Medical to share with them how our support group is a helpful resource for individuals with Microtia and Atresia and who have hearing loss.  On this day I had an hour and a half conversation with Oticon’s Vice President of Marketing explaining the little bit of awareness Microtia and Atresia has along with getting a list of questions answered that I had gathered from our support group members.

In January of 2011, I have a meeting with the Marketing Manager, the District Sales Manager, and the Vice President of Business Development for Sophono to discuss the newly released Alpha 1 system.  We also discuss the lack of awareness about Microtia and Atresia.