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2015 CHARGE Conference

Each year, the Oregon Deafblind Project offers assistance to a family to attend a conference. Last year, the project assisted in sending the Pierce family to the CHARGE conference in Chicago.

The Pierce family

Thank you so much for helping make possible our family's trip to the 2015 CHARGE conference held in Chicago. We are so grateful for the tremendous experience and know that it will help our family going forward with our two year old daughter Natalie who has CHARGE syndrome and with our four year old son Samuel. It is impossible for us to summarize the full benefits of the conference because having the opportunity to meet so many other families and develop friendships with people who understand what it is like to have a family member with CHARGE syndrome is priceless. We were also fortunate to be able to spend a few days among medical professionals whose abilities and knowledge were surpassed only by their passion for people with CHARGE syndrome.

The Pierce family

When we arrived at the convention center and saw all of the other CHARGE families we immediately felt like we were at home. It was our first time to meet almost everyone and yet it was almost like we knew them because of the common experiences of having a CHARGE family member. Friendships were easily formed and we were encouraged to see so many adults with CHARGE syndrome doing so well in life. As parents of a two year old still trying to grasp all of the complexities of CHARGE syndrome and dealing with all of the fear that comes with it, meeting the older CHARGE adults was the single best highlight of the conference for us. We are convinced more than ever that our daughter will be able to overcome any obstacles in her life and thrive as an adult.

The Pierce family at the CHARGE conference

The conference itself was well organized and the lectures were all very focused and covered a broad scope of subjects. It was impossible for us to go to all of the classes that we would have liked and so we had to be very purposeful in the ones that we chose. We decided early on that we would be attempting to go to the next conference in two years and so we chose to focus on classes that were more specific to the needs of Natalie for the next two years of her life. This meant that we went to lectures focusing on ENT, neurology, childhood assessment and behavior, psychology, siblings of CHARGE family members, and early education instead of the lectures about puberty or independent living. Our goal was to gain as much insight as possible into what we can reasonably expect from Natalie over the next few years as well as how to navigate through the various medical and educational systems.

We left the conference feeling equipped and informed to make the best decisions for Natalie in the coming years. The educational opportunities and conversation with other CHARGE families gave us valuable insight into the next couple of years with Natalie. We also learned about different things that we can do as parents to help our son in his development being a sibling of a child with special needs. We believe that we are so much better prepared now and have a network of people that we can lean on for advice or encouragement going forward. We are so very thankful that you helped make this trip possible for us and hope that anyone who has a special needs child is able to reach out and find a support network as wonderful as the one that we have found.

Thank you,

The Pierce Family

Western Oregon University | The Research Institute | The Oregon Deafblind Project

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The Oregon Deafblind Project is funded through grant award # H326T130008, OSEP CFDA 84.326T, U.S. Department of Education, Office of Special Education (OSEP), OSEP Project Officer: Susan Weigert.

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