Creating Memories For Louis
Six year old Louis from Melbourne aims to see and experience as much as he can before he loses his eye sight to a rare genetic condition, Usher Syndrome. Born profoundly deaf, this vibrant toddler is not letting adversity stand in his way.
Follow his journey, help create the experiences and share his adventures as his story continues. This is Louis Looking Forward.
HELP US OWN THE EQUINOX
On Saturday 19th September, Mordialloc father of two, David Shepard will run a marathon to raise awareness and funds for Usher Syndrome, a rare genetic condition his five year old son Louis was born with. Usher Syndrome causes deafness, blindness and balance issues and this year marks the first global Usher Syndrome Awareness Day.
The marathon will be run in conjunction with an Own the Equinox challenge around the globe. In the
Southern Hemisphere the equinox in September marks the transition to longer days than nights. This
symbolizes the future we want for Louis, a life full of light.
Help us Own the Equinox on behalf of Louis and the global #USHfamily. Together we can make Usher
Syndrome history and provide light for those with the condition.
At the completion of the marathon there will be a celebration BBQ breakfast. You can join us to run or walk any distance from 450m to the full marathon or come down to give your support to the runners and enjoy the celebration.
All funds raised on the day go towards Usher Coalition, an organization who fund global research for a
treatment and cure and support families such as ours. If you can’t join us on the day but would still like to
contribute, please visit Dave’s fundraising page at :
For more information email – firstname.lastname@example.org #USHEQX
On Wednesday September 9th, the Mordialloc Chelsea Leader featured this story on Dave and his marathon run.
Dave's story was featured on the Usher Syndrome Coalition website to celebrate the first global Usher Syndrome Awareness Day on September 19th 2015. Dave is training to run a marathon as part of the Own The Equinox campaign to raise much need funds and awareness for Usher syndrome. The link to his story and his fundraising page can be found below: