Help Henry See and Hear
Imagine you can only see through a straw. And, you are deaf. Scary, isn't it? For children and adults with Usher syndrome this is a reality and not an experiment.
Help Henry See and Hear is 501(c)(3) non-profit that supports individuals and families affected by Usher Syndrome. We support research, provide information, support and social opportunities for those who are deaf and blind due to Usher Syndrome. Our goal is to not only help Henry but to help every man, woman and child who is losing their sight to Usher Syndrome.
What does Help Henry See and Hear do?
Our name is a tad misleading. We are not all about helping Henry see and hear. We are about Usher Syndrome awareness. We are about supporting those in our community who have Usher Syndrome, are low-vision or blind due to Retinitis Pigmentosa or are deaf. We want to further research into vision-related disorders such as Usher Syndrome. Here is what we do:
- There is a scholarship at Utah State University in the amount of $2,500 that is funded by Help Henry See and Hear to train nationally credentialed interveners for deafblind children across the county. Utah State University is currently the only Nationally Credentialed program in the country for Interveners. However, there are other programs across the country going through the credentialing process.
- We send deafblind, deaf, and blind or low-vision kids to summer camp. This past year we sent 3 kids to camp at the Woodford Cedar Run Wildlife Refuge. In addition to paying their tuition we also provided each child with a support person so they had full access to the camp, the counselors and the other campers.
- For the Summer of 2015, we will be sending kids to Liberty Lake Day Camp in Bordentown, NJ. The camp will be 2 weeks in duration. LLDC boasts an inclusive environment that "is a transformative experience- ...physical, emotional, social and intellectual skills are developed within a warm, caring and supportive Camp Community." Keep an eye out for our camp application coming after the new year.
- We sponsor the Reek for a Week for Usher Syndrome campaign. The Campaign is centered around high school sports teams who wear the Reek Week shirt for 5 days to raise awareness of Usher Syndrome. We just completed our inaugural campaign with Camden Catholic High School in Cherry Hill, NJ. We are reaching out to other schools in the area to continue the campaign throughout the year.
- We support the Usher Syndrome Coalition. The Coalition houses the International Registry of individuals with Usher Syndrome to advance research into a cure for Usher Syndrome. Research into Usher Syndrome has been slow. This is due to the lack of access to people with Usher Syndrome by researchers.
Now that you know what we do. Here is how we do it:
We are working dilligently as a board to come up with exciting opportunities to raise awareness and money to succeed at our mission. Here are some of our current events and upcoming events:
We host our annual Usher Syndrome Awarenss Family Fun Day at the Flying W Airtport in Medford, NJ on the third Sunday in July. There is food, family fun such as games, helicopter rides, bounce houses, live music, a imited number of vendors, deafblind demonstrations and so much more.
We are hosting our first ever 5K in 2015. More infomation to come!
We are considering hosting a BINGO, a Blind Auction, and much more. Please check back often as we will update with new events.
And lastly, we rely on your generous support to keep us doing what we do. If you would consider a tax-deductible donation to Help Henry See and Hear you will be part of making the world aware and making a difference in the life of children with Usher Syndrome.