Upcoming Events &
Fundraising
About the Hope For Holt Foundation
Our Purpose
We have created this website to raise awareness about this rare disease and help support the Cystinosis Research Foundation in hopes of finding a cure. Rare diseases have less awareness, therefore less funding. The only way real progress is made is through the private funding of research. Please find out how you can help make a difference in the lives of exceptional children and their families battling this incurable illness.
Non-profit Status
The Cystinosis Research Foundation is a registered 501 (c) 3 non-profit organization. 100% of all donations made to the CRF are used for research. All contributions are 100% tax deductible. Please check with your employer to see if they do employee matches.
Partners
We have partnered with the Cystinosis Research Foundation (www.natalieswish.org) to help fight this terrible disease. The work they have done and the money they have raised in such a short amount of time is truly amazing. 100% of all donations go directly to research - all of the overhead is completely underwritten.
The Foundation has created their own scientific review board and make sure that all monies raised are immediately put to work. They have already made significant strides and have tremendously improved the quality of life for the children with this disease. The life expectancy has nearly doubled in recent years due to some of their research. But there is still much work to be done and we need your help.
Research Progress
The Cystinosis Research Foundation's mission is two-fold and focused: to find better treatments and a cure for cystinosis. This past year has been one of new research developments and significant advancements in the treatment of cystinosis. A slow-release medication will be a reality in the near future, and scientists are only about 5 years away from clinical trials testing new therapies they believe and hope will lead to a cure for cystinosis. If you would like to learn more about the CRF's studies, grants and progress, visit the CRF website here.
Hope For Holt Board of Directors
| Chris Barry | Ken Bauer | Luke Blythe | Phillips Bragg |
| Eric Broadway | Jeff Brock | Chad Cooke | Mary-Margaret Vogul |
| Rich Doering | Dabney Estile | Scott Fisher | Chrissy Grier |
| Jason Grier | Aubrey Grier | Brandon Grier | Tom Hughes |
| Danny Kelly | Mike Knight | Matt Livingston | Scott Pederson |
| Davis Robinson | James Shipley | Charles Thrift | Brad Turlington |
| Dave Turton | Barry J. McPherson |
In Kind Sponsors - Many thanks to those that donate their time and expertise to Hope For Holt
Latitude 35 Graphic and Web Design
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