Usher Syndrome Coalition

Hi everyone! It’s my birthday, and this year, I’m doing something a little different. Instead of gifts, I’m asking you to join me in supporting the Usher Syndrome Coalition, an organization dedicated to raising awareness and accelerating research for the most common genetic cause of combined deafness and blindness. This cause is close to my heart, and I believe that together, we can make a difference for those affected by Usher syndrome.

Your donations will help the Coalition in incredible ways, including:

• Funding critical research initiatives to find better treatments and solutions for individuals with Usher syndrome.
• Providing essential resources and support to families navigating the challenges of this condition.

Let’s celebrate this birthday by giving the gift of hope and support. Thank you for considering a donation!

It's a "noteworthy" birthday year for me and Ryan: the big 4-0. So Ryan had an extraordinary idea--to make it count. We will run/walk 40 miles to raise money for our son, Jayden, and every single brave soul diagnosed with Usher Syndrome. (Please see the description of Usher Syndrome and of Usher Syndrome Coalition  below.) On Ryan's birthday, October 3rd, we will be hitting the pavement (or the treadmill) to conquer 40 miles with two things in mind: the bottomless love for our son, and the fact that Usher Syndrome CANNOT win, in one way or another! If you feel so inclined (and perhaps a little crazy;) please join us on our running journey that day/week/weekend! (Unlike Ryan, I will be running the 40 miles on more than one day (on the 1st-3rd), knowing my vertically challenged legs couldn't handle a one-day running binge.)

Thank you in advance for every step that you take, every donation that is made, and most importantly, every prayer that is said. We WILL make a difference. ...and this is only the beginning.  

("Usher syndrome is the most common genetic cause of deaf-blindness. The Usher Syndrome Coalition aims to identify and connect the 400,000+ people living with Usher syndrome worldwide with researchers, vital information, and others in the Usher syndrome community. By bridging the gap between researchers and those impacted, we will expedite the full understanding of Usher syndrome necessary for the development of treatments for the associated vision, hearing and vestibular issues and, ultimately, a cure.")

• Funding groundbreaking research initiatives to find treatments and cures for Usher syndrome.
• Providing essential resources and support for individuals and families navigating the challenges of Usher syndrome.