When we first found out that our son, Conner, had Usher syndrome, we were devastated. Conner was born deaf and received a cochlear implant at a young age. Conner was getting ready to attend a mainstream kindergarten class with his hearing peers when we found out that he had Usher syndrome. Shortly after Conner’s diagnosis in 2004, we decided to start the Hear See Hope Foundation. Our hope was to turn all of these confusing emotions into something positive. We gained great hope that we could make a difference and with a sustained commitment, there would be a cure for Usher syndrome in our children’s lifetime. We discovered many very helpful and knowledgeable researchers that are doing all they can to find a cure for Usher syndrome. We also found a supportive community of families who also are impacted by Usher syndrome.
We also realized the importance of a supportive community of family and friends who have supported the foundation since 2004. Not only have they provided financial support to help fund research grants but many of them support us personally when we need strength.
With the birth of our fourth and youngest son Dalton in April of 2008, we found a renewed sense of urgency to find a cure. Despite our best efforts to eliminate the chance of Usher syndrome in another child, Dalton was born with Usher syndrome.
Now that our boys are older, they are becoming more involved in Hear See Hope. Conner, our oldest son has been really great at telling his story to others, in hopes that he can inspire others with his positive outlook. Cole, our second son, has started to plan fundraisers of his own. Hunter and Dalton, our third and fourth sons, are right aside us encouraging us with their smiles.
This has been a challenging yet rewarding journey. We’ve learned a lot along the way and met many people who inspire us to keep the Hear See Hope mission going. All of what we do is done with the help of volunteers.
We are always looking for other fundraising ideas and partners to collaborate with to increase awareness of our cause. Some of the most rewarding work we have done has been to help support other families who want to do fundraisers in their communities but don’t have the infrastructure to do so. We’ve developed some great partnerships this way and worked with many special families who have helped motivate us to keep the foundation going. We can’t do this alone! If you have any ideas please contact us.
There have been significant breakthroughs in Usher syndrome research in the last few years and there is more hope than ever that a cure is in sight.
We are a 501(c)3 not for profit organization in search of funds to sustain the fight against Usher syndrome. Please help us make a difference by supporting us in our fundraising efforts for preventing, treating and curing Usher syndrome.
Coalition for Usher Syndrome Research
In late 2007, we were put in contact with a family in Boston who has a daughter named Bella who has Usher syndrome. Mark Dunning, Bella’s father, is a former Hear See Hope board member and was a driving force behind the creation of the Coalition for Usher Syndrome Research. The Coalition has brought families and researchers together to create an even stronger community. The Coalition has been the driving force behind the creation of an Usher Syndrome Registry. This registry is necessary to help identify potential participants in clinics trials and helps increase awareness of the need for current genetics testing.
Todd and Lane McKittrick